 |
|
| Date |
Description |
| June 6, 2005 |
Notice:
(From
the New York Times) JONES-Juliet Nicola. 35, died on
Friday, June 3, 2005, after a three-year bout with cancer. She
was born in Amersham, England, in 1969, to Richard and Dorothy
Luke. She is survived by her daughter Katherine Juliet, sister
Rebecca, mother Dorothy, father Richard and husband Richard.
We will all miss her dearly. The cremation will be held at Ferncliff
Crematorium in Hartsdale, on June 8, 2005, at 11 am. In lieu
of flowers, donations may be made in honor of Juliet to IBCResearch
(http://www.ibcresearch.org/donations/).
Published in the New York Times on 6/6/2005. (for a map
to Ferncliff Crematorium click
here) |
| January 1, 2004 |
With the new year and the fight against her
cancer going well, Juliet has decided to focus on the future
and reestablishing a normal life. With that, this timeline blog
will be suspended indefinitely. Juliet wishes to thank all those
who have visited and hopes that her story has helped create
awareness for this rare form of breast cancer known as IBC.
|
| December 10, 2003 |
Katie turns one-year-old today. Over the
weekend Juliet and Richard hosted a first birthday party for
her. Many friends, neighbors and relatives came to celebrate.
It was a joyous occasion. |
| October 14, 2003 |
Juliet and the family fly to LA for the Sharon
Osbourne Show. The whole thing felt very surreal, she said.
"I didn't worry about it much beforehand. But the night
before I got virtually no sleep. I am going to be on national
television, it is 'live to tape' so I can't mess up and do it
again. I am terrified - why am I here, what WAS I thinking!"
To see the segment, please click here for high
speed or here for dial-up. |
| October 11, 2003 |
Richard and Juliet buy a new printer, which
is also a photocopier. "I need it to process the continuing
mountain of medical bills. The paperwork is unbelievable. The
NHS (the socialized health service agency in England), for all
its problems, is still a wonderful thing." |
| October 3, 2003 |
Her four-month check up with Dr Van Poznak
went almost perfect. Juliet received the "all clear"
again except the same liver blood test. It must be repeated
but the doctors are not too concerned. "Back to the low
fat/no alcohol diet... Arghhhhhh!" Juliet said. She will
have no check up until February. "That seems like an incredibly
long way away but I am feeling quite relaxed about it. I am
adjusting at last," she said. |
| September 28, 2003 |
Juliet got recognized in the supermarket
as "the person from Cosmo (! : ))," the woman said.
"I had a nice chat with the lady. It was Katie she recognized,
who could forget that hair!" |
| September 24, 2003 |
The Glamour magazine article was seen by
the human interest producer of the Sharon Osbourne Show. The
show contacted Juliet about having her, Katie and Richard go
to LA and be guests on the show in honor of Breast Cancer Awareness
Month. Juliet agreed to go in order to "get the word out
about IBC on national television," she said. |
| September 21, 2003 |
On a walk through Central Park, Juliet gets
stung by a wasp! She spent Monday on the phone between Sloan
Kettering and her regular doctor deciding whether or not she
needed antibiotics. The sting was on her left hand, which puts
her at risk of lymphedema because most of her lymph nodes on
that side have been removed. In the end, the doctors decided
that antibiotics were not not necessary, "but I learn a
valuable lesson," Juliet said. "I must be more careful!" |
| September 18, 2003 |
Juliet has her first mammogram. Once someone
is diagnosed with breast cancer your chances of getting it again
in the other breast increase. Normally she should have had a
mammogram already, but because there was no obvious lump and
because she was pregnant, the doctors waited until now. Juliet
got the results back right away, "which is a big surprise
to someone used to the UK NHS healthservice!" She said.
"My results are all clear." |
| September 15, 2003 |
The Glamour Magazine article featuring
Juliet finally dropped. She went out to buy it and admitted
she was pleased with the picture and they were kind enough
to send her a couple of large copies. As for the narrative,
Juliet said it was, okay, but the magazine did not
include all that they promised. Juliet asked them repeatedly
to mention the symptoms of IBC, this website address, the
IBC support website address and the 1800 number. "Passing
on this information was my whole reason for doing it [the
article.]," Juliet said. "They assured
me they they would. Well surprise surprise, they have done
neither. I was put in touch with Glamour via the Public Affairs
officer at New York Presbyterian Hospital where I gave birth.
Her angle was to get the hospital mentioned - they didn't
do that either, so I bet she is not too pleased either: ).
I am irritated and feel I have been used a bit as a side show
freak. Oh, well, you live and learn..."
Incidentally, Juliet noted, Hilary Blackburn (the woman featured
in Glamour's main breast cancer article) is a friend of a
friend. She also was diagnosed last year at age 32. "Weird
huh?" Juliet said. "That we are both in the same
mag?" |
| September 10, 2003 |
Richard and Juliet returned from a wonderful
trip to the U.K. Juliet turned on the computer to wade through
the IBC list messages. She received news that a close IBC friend
from the list, who has a baby one week older than Katie, was
diagnosed with brain metasis while Juliet was away. She was
almost done with her IBC treatment when the brain mets showed
up. Her IBC pathology report was almost as good as Juliet's.
So far, the woman has had brain surgery and will undergo whole
brain radiation. She is 36. "I also learn that another
woman who was always there to support the rest of us has now
gone into a hospice (she is 53) and a 16 year old has died -
yes 16!!!" Juliet said. "I sit in front of the computer
and weep." |
| September 4, 2003 |
"Well it has been my first anniversary.
One year since diagnosis. I let the day pass with hardly a comment.
We were traveling so it is easy not to dwell on it. I have had
a very difficult time the past few weeks. Each day that has
passed since the beginning of August has been a sense of 'this
time last year...' Now the first anniversary is out of the way
I am hoping that I remember less and less what life was like
before. I have to accept my new self and life, however hard,"
Juliet said. |
| August 31, 2003 |
Katie learned to wave bye-bye. |
| August 30, 2003 |
Richard's sister, Sarah, married Toby in
the Lake District of England. Juliet and Richard made the trip
back to the U.K. "The wedding went beautifully," Juliet
said. |
| August 23, 2003 |
Juliet went to get her hair cut again, it's
really curly, she hates it. She said, "My hair fell out
and never grew back - someone else's hair grew back instead!"
Some people have told her how much it suits her short, but some
others "have been very honest and said it looked better
when I was bald. I am hoping it improves as it gets longer." |
| August 18, 2003 |
Juliet found this
message on the IBC website support list pertaining to the latest
IBC survival statistics:
"I don't want to break anyone's spirit
but Dr. Patricia Tai in Saskatchewan using SEER data and
using a log normal distribution (yes, I know this is lots
of statistical stuff) calculated that 95.5% of patients
die within 7.67 years (private communication, not published).
"
Juliet knows that statistics should not
to be used for each individual case but she admits it is hard
not to think about them. "By the above data I have a
4.5% chance of celebrating my 40th birthday," she said.
"If I get there I will certainly try and do it in style.
It is very hard for me to hear people complaining about their
40th and 50th birthdays right now." |
| August 12, 2003 |
Juliet went for genetic counseling at MSKCC
to see if it is recommended that she have the blood test done
for a breast cancer genetic marker. The doctors said she has
a mild familial history but they still recommend the blood test.
She will discuss it with her family and have the blood test
done in a few weeks. "No matter what the outcome of the
test, it is still recommended that I, and my other family members,
have regular screenings for breast, ovarian, prostate and colon
cancers," Juliet said. |
| July 28, 2003 |
We always knew Juliet was glamorous and now
it will be truly legit. Glamour magazine is doing a story on
her for their October issue, which is National Breast Cancer
Awareness month. Today, Juliet went into the City for a professional
photo shoot (this is old hat for Juliet by now). "They
gave me some of the Polaroids to keep. I hope the real photos
are as good," Juliet said. "The photographer was lovely
(and 6 months pregnant!) so Katie was the main attraction for
all." |
| July 26, 2003 |
The Jones went back to Annie
Watson for a full family portrait. It was Richard and Juliet's
Christmas present to one another. Watson is the photographer
that shot Juliet while she was bald and pregnant back in October.
"Katie stuck her tongue out the entire time!!" Juliet
said. |
| July 18, 2003 |
The doctors are taking some time to reassess
the decision to put Juliet into menopause. They are repeating
the hormone receptor test on tissue that was taken out of her
breast back on September 4, 2003. If the result is the same,
hormone negative, then Juliet will not need the injections.
The results are due back in a couple weeks. |
| July 14, 2003 |
Juliet returned to the doctor's office because
her menstrual cycle has returned, which is not good news, she
said. She will be given monthly injections to shut it down.
Because of the risk of the cancer coming back, she cannot have
any hormones in her body. That means no hormone replacement
therapy, no hormonal methods of contraception, no soy-because
it mimics estrogen- and worst of all, no more children. "The
side effects of the injections are the same as the menopause,"
Juliet said. "Hot flushes, mood swings, possible loss in
bone density, etc..." (sigh) |
| July 5, 2003 |
Juliet had her first real haircut since early
last year. "Just a trim to make it look like it happened
on purpose," she said. "My hair is coming back curly!" |
| June 23, 2003 |
Juliet had a check up with Dr. Petrek,
her breast surgeon. Nothing too new to report other than she
has a mammogram in a few weeks because they do not have a
baseline reading for her yet. "She (Dr. Petrek) confessed
that my path results were a surprise to her. She did not expect
me to do so well. She circled 'NED' (no evidence of disease)
on the paperwork. That felt great, let me tell you.
"Everyone says how much short hair suits me. I have
never had short hair before but I could get used to the way
it is so quick and easy. The taxol made it a bit lighter but
it is darker at the roots. Too short to tell yet if it will
come back curly or not."
|
| June 12, 2003 |
"I can't believe Katie is now 6 months
old," Juliet said. "Didn't that fly by? I am feeling
like I am just starting to be a normal mum at last. Going to
mother and baby groups and all that stuff. Katie has been a
real joy, especially recently, she has become much more animated
around this time. It is very funny a lot of the time. She giggles
lots, smiles at the cat and is generally a very happy baby.
My only issue is she is quite clingy for me since I made the
decision not to go back to work. She is definitely mummy's girl
right now. Woe betide any baby-sitter, if she wakes up in the
night when I am not here!" |
| June 11, 2003 |
Katie had her six month doctor's appointment.
She measured 27.5 inches and her weight is off the scale, above
the 100th percentile. "Her peahead remains, though,"
Juliet said. She sits up now, albeit a little wobbly, and has
sprouted the start of two tiny teeth. "So she is very dribbly
and chews on everything." |
| May 21, 2003 |
Juliet tried to join a healthy eating trial
for breast cancer patients
but she is not eligible because her cancer is stage IIIB (Trial
is stages
I-IIIA). "How lovely to know that my cancer is too advanced
for this trial!" she said. |
| May 19, 2003 |
Juliet's check up with the doctor went well.
The doctor thinks the pain under her
arm is muscular, from carrying Katie on the right side all the
time. Juliet is out of the habit of using her left side because
of all the surgery and radiation pain. "Now it just feels
weird to feed or hold Katie on my left side," Juliet said.
The doctor checked Juliet's blood results too and all the tumor
markers came back normal. "Yipee," Juliet shouted.
"But I have to repeat one of the liver enzyme tests as
it was slightly high. They want to repeat it in June and I am
to have no alcohol or fatty food for a week beforehand (a week!!!)."
Juliet also may be eligible for a vaccine trial later in the
year." |
| May 13, 2003 |
"I have had a slight pain under my right
arm for a couple of weeks
now. I can't put it off any longer, I need to see my oncologist
for a check
up. I have moved my June appointment forward to this Thursday
(15th May). I
am quietly, utterly terrified," Juliet said. |
| May 11, 2003 |
Juliet's first Mothers Day. "Katie,
with the help of her Dad, bought me a
beautiful leather-bound journal so that I can write down my
thoughts, Katie's
developments and our special moments." The couple also
was featured on WNBC- Channel 4 for a special mother's day segment.
Click here to see the video package.
"I could not bear to watch it as it aired--too nervous--but
Richard taped it and I have
seen it since." |
| May 1, 2003 |
Back in the USA, Juliet has an epiphany.
"I have decided that I cannot go back to work," she
said. "It just feels all wrong." She is very sad to
be leaving MSF,
but she said it is not
her priority anymore. "I have told Richard that later on
I will seek employment at 'Hooters,' except my T-shirt will
just say 'Hoot!!' |
| April 27, 2003 |
In Barbados, Richard, Juliet and Katie were
involved in car crash. Local young boys traveling at break-speed
knocked the family off the road and caused their car to roll
over on it's side in the middle of a sugar cane field. Miraculously,
the family escaped unharmed and still managed to enjoy the vacation.
"We do feel however, that it is about time something nice
happened to us!" Juliet said. |
| April 22, 2003 |
"I am pretty sore now," Juliet
said. "My skin has a big, red square on it. The skin is
broken and blistered in places and underneath feels bruised.
I still think I have experienced worse sunburn in my life but
not for this long. I can't sleep on my side again and getting
out of bed is painful." The good news though: only two
more sessions to go and all treatment will be complete. What
a year! Then, she and Richard are off to Barbados for a wedding
and to relax for a week. "What will I do with myself when
I don't have to go to the hospital every day?" |
| March 31, 2003 |
Katie learns to laugh. Juliet is halfway
through her radiation treatments and so far has experienced
no side effects. "I am very tired but I think my daughters
sleep patterns (or lack of) may be more to blame than radiation,"
she said. "I have had lots of family support, my mum and
aunt are here now. My mother-in-law and sister-in-law arrive
soon." |
| March 14, 2003 |
"After all the Friday the 13ths [in
this saga]....how about this one," Juliet said. "I
found out yesterday that I will start my radiation on Monday
as my blood counts are good." This means, if there are
no breaks in the machine, and her side effects are not too bad,
Juliet will finish all her treatments on the April 23, 2003,
which is, "one year to the day that I found out I was pregnant.
A very strange year indeed." |
| March 12, 2003 |
Juliet had her body mold made and body tattooed
in preparation for radiation therapy. "The tattoos are
tiny," she said. "Just like someone poked me with
a pen, I have 7 of them." The mold and tattoos make sure
Juliet is in exactly the same position each time. She will go
every day, Monday through Friday for 28 treatments. |
| February 28, 2003 |
Today was Juliet's last chemotherapy
session. She hopes it's the last one forever. "I have
mixed feelings," she said. "I am pleased but also
apprehensive. What if there are still cancer cells floating
around in my body now there will be nothing to attack them.
I feel like asking for just one more dose to be sure."
During her pre-chemo appointment, the doctor asked Juliet
if she still felt numbness and tingling in her fingers. She
did, as well as her feet now too. The doctor offered to decrease
the dose to minimize this side effect, but Juliet declined.
She told the doctor she could manage and asked, "the
feeling will come back in my fingers, right?" To which
the doctor replied, "Actually, not necessarily."
So the numbness and tingling may be permanent. "How
did I miss that in my briefing with the nurse?" Juliet
wondered. "Ohh well."
After this session, Juliet won't see the doctor for another
four months. "This is a very daunting prospect,"
Juliet said. "How will I manage the fear every time I
have a headache (is it brain mets?), backache (spine mets?)
and cough (lung mets?)........"
*note: "mets" refer to metastasis, which is a kind
of cancer that some women suffering from breast cancer develop
after initial treatment. For more information, please visit:
http://www.bcmets.org/
|
| February 27, 2003 |
"Richard and I have been married for
5 years today. We get a baby-sitter for Katie and spend our
first night out together since she was born. I had a little
wine with dinner even though it is my last chemo tomorrow,"
Juliet said. |
| February 22, 2003 |
Attended the Third Annual Conference for
Young Breast Cancer Survivors in Philadelphia hosted by the
Living
Beyond Breast Cancer group. "It was nice to be in a
room with people my age who also had no hair," Juliet said.
Excellent presentations allowed Juliet to learn a lot more than
ever before about her disease. But, because she could only make
it a day trip, there really wasn't enough time to network. "So
next year I will go for the whole thing Friday night and Sunday
morning too. Didn't want to be away from Katie that long this
time." |
| February 21, 2003 |
Juliet saw got a visit from a high school
friend she hasn't seen for more than 10 years, though they have
kept in touch via letters and email to share important life
moments. "When she left she gave me the most overwhelming
hug," Juliet said. "I kind of got the feeling that
she was worried she may not see me again - if it is another
10 years until we have the chance then she admittedly has a
point. But it felt really weird..." |
| February 14, 2003 |
Valentines Day and chemotherapy number 3,
"very romantic!" Juliet said. The chemo itself went
fine but the side effects are the same as before-- aches and
pains, red face etc.-- with some added new problems-- mouth
ulcers and finger nails have started to fall off. The positive,
though, is that there's only one more treatment left. "We
took our mind off it all by spending the long weekend in Vermont,"
Juliet said. "It was Katie's first vacation." |
| February 10, 2003 |
"I am so tired it hurts," Juliet
said. The combination of sleepless nights, chemotherapy and
anemia are really taking their toll. "Also, I am finding
that I have too much time to think about things in the middle
of the night. The statistics I am facing seem horrifically real
at 4 a.m."
|
| February 9, 2003 |
On a family outing, Juliet, Richard and Katie
went to the shopping mall at Woodbury Commons. There, Juliet
discovered a different burden to living with cancer and that
all pain isn't necessarily associated with the physical. "Whilst
we were there I had to use the rest room," Juliet said.
"When I tried to enter the ladies room, a little girl,
probably about six years old, was standing at the door and she
looked at me funny. It took me a second but I realized she was
looking at my head. 'The men's room is over there,' she said
to me, virtually barring my entrance. And I realized she mistook
me for a man. I have never felt so unattractive, no hair, one
breast missing, very few eyelashes and eyebrows, and now children
think I am a man. I took me about half an hour to find this
incident funny - Richard, bless him, held off from laughing
until I could find it funny too." |
| February 5, 2003 |
The side effects of the chemo are the same
again. Juliet's face appears sunburned for about two days afterwards,
due to the steroids she's told by doctors. The bone pain started
again on the Sunday following the Friday appointment and continued
through Wednesday. "I have been given Celebrex for the
pain this time but it doesn't help much," she said. "I
am also losing sensation in my fingertips which makes buttoning
Katie's little clothes difficult. On the bright side though,
two down, two to go."
|
| February 4, 2003 |
She spent the morning trying to find childcare
for Katie so she can return to work at Doctors
Without Borders in June. "I am returning part time
as long as I can find daycare - easier said than done,"
Juliet said. "The attitude seems to be that I should have
sorted this out last year. Feel like shouting that I had a lot
on last year!! Something will hopefully come up. Katie is on
4 different waiting lists now."
|
| February 2, 2003 |
Chemotherapy number two was completed on
Friday. Her blood results were good, she's almost not anemia
anymore and the white cell count is fine- helped along by daily
injections of Neupogen she's been administering herself at home.
"Sadly, by Sunday," Juliet said, "my hair has
started to fall out in clumps again. So I went to the barber
shop in Tarrytown to get it all shaved off again. Pretty depressing
but at least I know how quickly it grows back, besides, now
I get a cheap men's price haircut!"
|
January 22, 2003
|
Update on how Juliet's coping with this round
of chemo (Taxol)-- "It has not been so easy this time.
I started having severe pain on Sunday, mostly in the bones
of my knees and feet. This combined with the sleepless nights
feeding Katie has made it very difficult. However, I suppose
it is about time I had some adverse side effects from all these
drugs!" she said. |
| January 17, 2003 |
The next round of chemo starts. This is the
first in a series of four, which will span eight weeks. An old
pro at it now, Juliet has not suffered any side effects, though
it's still a bit early to tell completely. "They've said
that I may not even lose my hair this time around," she
said. |
| January 15, 2003 |
Scanning an IBC support group website, www.ibcresearch.org,
Juliet finds and signs up for a breast cancer survivors conference
called "Living Well Today for the Promise of Tomorrow..."
Presented by the Living
Beyond Breast Cancer group and the Young
Survival Coalition, the conference will focus on dealing
with the needs of younger patients. "When I read the flier,
the quote: 'Living decades with this serious diagnosis' is what
struck me," Juliet said. "It's an aspect of the disease
I hadn't yet thought about and what makes you different than
an older survivor." |
| January 10, 2003 |
Juliet goes to oncologist appointment where
she will find out the results of some blood tests and potentially
start her next round of chemo. The doctor decides to wait until
next week to start, but the results of the blood tests are better
than good-- tumor markers in the blood show that the cancer
has not spread to other parts of her body. |
| December 31, 2002 |
Mum, Dad, and baby ring in their first New
Year as a family. The night is quiet, a little champagne accents
the mood as they watch the ball drop and go to bed-- until Katie
wakes in the middle of the night, that is. |
| December 26, 2002 |
Boxing day (if you don't know yet, Juliet
is British) arrives and so does the results from the mastectomy--
0 of 16 lymph nodes infected, clear margins in bordering areas,
and no signs of active disease. The oncologist noted that these
results are the best they could possibly be. "...[sigh]...
when I realized who it was on the phone I was terrified. My
heart beat and then just sheer relief, really pleased." |
| December 20, 2002 |
After a successful surgery and proper physical
training, Juliet's released from the hospital. |
| December 18, 2002 |
Pushed a few days back because of the C-section,
Juliet undergoes mastectomy. |
| December 15, 2002 |
Juliet and Richard put up Christmas tree.
Juliet decorates tree and even climbs stairs to tend to Katie--
that's less than a week after a C-section! |
| December 13, 2002 |
Another lucky Friday the 13th, and Juliet
and Richard's 11-year anniversary, mum and baby are released
from the hospital. |
| December 10, 2002 |
Inducing drugs don't seem to work, Juliet
develops a fever. Doctors decide to proceed with a C-section.
"I wanted the induction to work because I didn't want to
have two lots of major surgery in one week," Juliet said.
"But, at the same time, I wanted the best for my baby if
that's what it needed." KATIE BORN!!! 10:25 p.m. -- healthy
as can be. |
| December 9, 2002 |
Juliet goes into New
York Presbyterian hospital and receives drugs to induce
labor. |
| November 11, 2002 |
In an appointment with the surgeon, the doctor
was pleased with the results of the chemo and decided to schedule
a mastectomy before the next round of chemo started back up.
This would be a few days after Juliet's labor. "It was
absolute jaw-dropping horror," Juliet said regarding the
mastectomy. "I knew it was coming but didn't expect it
to be so quick." |
| November 4, 2002 |
Growth scan to measure progress of baby shows
a proper size and weight. Doctors discuss inducing labor in
early December, a month early, in order to start the next round
of chemo sooner rather than later. "After 36 weeks the
baby is fully cooked anyway," said Juliet. "So since
she wouldn't be premature, I could get on with my treatment." |
| September 13, 2002 |
Chemotherapy started on Friday the 13th.
"We can't get any unluckier," Juliet said to the doctor
when asked if that date was okay. |
| September 6, 2002 |
Juliet seeks second opinion at Memorial
Sloan Kettering Cancer Center (MSKCC). Results confirm first
opinion and the doctor there recommended immediate chemotherapy.
They discussed pros and cons to keeping the baby and the doctor
recommended not to abort, sighting that "most" babies
deliver healthy after chemo. |
| September 4, 2002 |
Antibiotics were not helping so under local
anesthetic a biopsy was performed. Results came back immediately
and the doctor said that it confirmed their worst fears. Next
major decision was whether or not to terminate the pregnancy.
New York state law forbids abortions after 24 weeks. Juliet
was two days away from that deadline. |
| August 28, 2002 |
Because the antibiotics were not helping,
Juliet went to see a surgeon. He said her symptoms, "were
concerning to him," Juliet said. "Which isn't good
coming from a doctor!" He changed the antibiotics to a
different kind and wanted to perform a biopsy if they didn't
help. |
| August 19, 2002 |
Showing up a day early for her scheduled
doctor's appointment because of shooting pains and severe swelling
through her left breast, the doctor prescribe antibiotics, which
is a standard first step in the diagnosis of IBC. "I don't
know if he was thinking if it could be IBC and just not telling
me because he didn't want to frighten me or if he was just hoping
that it wasn't." |
| July 26, 2002 |
Juliet flies home to England to surprise
her grandmother at her 80th birthday party and to share the
news of her pregnancy with her family in person. |
| July 23, 2002 |
During regular check up, Juliet first points
out to doctor that she has a swollen lymph node under her arm.
Doctor's response was to not worry about it, probably just a
slight infection. |
| June 26, 2002 |
Doppler scan records baby's first heartbeat.
"It was the first time I cried... I waited until I left
the doctor's office and wept in the corridor." |
| May 8, 2002 |
First sonogram shows healthy baby forming.
"It looked like a jellybean with a pulse," said Juliet. |
| April 23, 2002 |
Juliet finds out she's pregnant. |
|
|