Kathy and Keith Marshall, with Kathy's father in their backyard
A few short months ago, in the Winter of 2002, 45 year-old Keith Marshall
and his wife Kathy were coming up on 20 years of marriage together. He
and Kathy had started talking about retirement, and building a house on
a pretty spot by a nearby lake. He continued to work hard as a skilled
carpenter, but after work Keith and Kathy were always doing something.
Packers games and refurbishing antique bicycles filled the long, brutally
cold Wisconsin winters. Summer's warmth brought festivals and "the
three Bs": beer, brats, and baseball. He was as robust physically
as their lives were full. He rode the bikes he fixed. He transformed the
hill in his backyard into a multi-tiered terrace through sheer strength,
manhandling boulders of several hundred pounds.
They could never have imagined what was about to happen.
BLOATING AND ABDOMINAL DISCOMFORT LEAD TO DIAGNOSIS
It started on March 1, 2002, when Keith experienced the onset of bloating
and abdominal discomfort. He took Simethicone for relief of gas with mild
improvement. He eliminated several foods from his diet including high-fiber
vegetables, radishes and onions, and gained slight alleviation of his symptoms.
Beginning around March 8, he noticed progressive, increased abdominal swelling
and discomfort. His discomfort was located on both the left and the right
sides in the upper and middle portions of the abdomen. He had difficulty
sleeping and loss of appetite, but no nausea or vomiting.
Keith, his sister Candace (r) and her daughters as they ready for their
yearly participation in a charity bike ride. All the bicycles in the pictures
were refurbished by Keith
On the morning of March 11, Keith presented to his primary physician, who
referred him to Dr. David Engstrand, a surgeon. Dr. Engstrand saw Keith
the same day at Elmbrook Memorial Hospital in Brookfield, Wisconsin. An
abdominal CT scan taken on March 12 at Elmbrook Memorial revealed among
other things the presence of "subdiaphragmatic collections of liquid"
in the right and left "gutters" of the abdomen and some thickening
of the omentum. No tumor could be appreciated. A colonoscopy performed
the same day detected no abnormalities.
Still unable to explain Keith's continuing symptoms, his physicians
recommended a laparoscopy with the possibility of an exploratory laparotomy.
Dr. James Burhop performed the surgery on March 13 at Elmbrook Memorial.
The general laparoscopy detected fluid throughout the abdominal cavity.
On closer inspection, Dr. Burhop could see "studding" of the
peritoneum throughout the abdominal cavity, but most prominently in the
lower abdomen.
The peritoneum is a thin layer of tissue encasing the abdominal organs.
The pleura is the same kind of tissue which encases the lungs. Mesothelioma
affects the peritoneum, pleura, and other tissues, and physicians experienced
with the cancer describe the appearance of nodules spread diffusely across
this thin tissue with such phrases as "studding", "blisters",
"sandpaper", and "cottage cheese."
Dr. Burhop surgically removed two of the peritoneal nodules and submitted
them to the pathology laboratory for "frozen section analysis"
(FSA), a relatively quick test which is completed during the surgery to
confirm the presence of cancer. FSA of two excised peritoneal nodules
confirmed that this indeed was a malignant tumor.
Dr. Burhop removed the laparoscope, made a midline incision and saw significant
studding of the entire peritoneal cavity. He surgically removed a very
thickened, nodular portion of the omentum and several more "peritoneal
implants." Slides, stains and blocks from the resected tissue were
forwarded to the Mayo Clinic in Rochester, Minnesota for analysis., but
based upon the tumor's appearance, Dr. Burhop was convinced this was
mesothelioma.
Keith and his sister Candace in front of his home. All the rocks were carried
and carefully positioned by Keith. The rocks weighed between 100 to 200 pounds
Five days after the surgery, Keith was discharged from the hospital without
a definitive diagnosis. On March 25, 2002, Mayo reported its diagnosis
of malignant mesothelioma based on immunohistochemical staining.
ANTI-MESOTHELIN IMMUNOTIXIN
The Marshalls were dumbfounded. As Kathy wrote shortly after Keith's
diagnosis, "He is so healthy looking and strong that it just seems
like someone has made a horrible mistake." Kathy began desperately
looking for treatment for her husband of 19 years. She admits she was
"grasping at anything I can as I am just devastated by this."
On April 1, Keith consulted with the Waukesha Regional Cancer Group. A
physician there recommended he apply for candidacy into the Phase I Study
of SS1 (dsFv)-PE38 Anti-Mesothelin Immunotoxin trial at the National Cancer
Institute (NCI) in Bethesda, Maryland. The Marshalls applied and learned
on April 2 that Keith had been accepted into the program.
In preparation for the study, Keith underwent several tests, including
a blood test. One of the blood tests showed that some of his antibodies
would destroy the toxin in the Anti-Mesothelin. This toxin is vital in
killing the cancer cells. It was further explained to the Marshalls that
there were low levels of antibodies and that if they were to give him
the first round of treatment it was very possible that Keith's body
would produce more antibodies that would destroy all of the toxin.
NCI asked Keith to provide another blood sample. On April 29, the Marshalls
went to the Waukesha Memorial Hospital and had a blood sample drawn, which
was promptly shipped to the NCI. The results of the test were returned
almost a week later. On May 8, Keith learned that he would not be included
in the NCI study.
CISPLATIN AND GEMZAR
The next day, Keith met with the physician who then set up a chemotherapy
program for him. On May 14, he underwent his first chemotherapy treatment.
Chemotherapy has not been easy for Keith. His regimen consists of Cisplatin
and Gemzar, and as of July 1, he had received two treatments with the
first and five treatments with the second.
Normally, the treatments are given on alternating weeks to allow the body
time to recover from the brutal effects of Cisplatin. Keith was scheduled
to receive both drugs during the week of June 24. This time, his body
was too weak to endure the hammering that chemotherapy can inflict and
was postponed until July 2.
Before he could receive the next treatment, however, Keith's doctors
implanted a Medi-port on July 1 in his upper left chest area. A Medi-port
is a device that creates a semi-permanent "hole" in the body
that taps directly into a vein. The device facilitates easier and more
rapid drawing of blood and administration of chemotherapeutic drugs. Keith's
treating staff had encountered difficulty finding his veins, and the Medi-port
was deemed the best solution. Keith initially balked at the idea, calling
his consent to the procedure "giving in" to the disease. Kathy
intervened, and on July 1, he underwent the surgery.
A June 10 CT scan revealed that Keith's tumor had not shrunk. He will
undergo another CT scan on July 15. He and Kathy are hoping for better results.
"CRAZY", INSPIRATIONAL DETERMINATION
Keith's body seems to be dissolving. His hair is thinning. He moves
slowly, less forcefully, but he keeps at it, stubbornly and stoically
persistent, willing himself out of bed, to sit up, to eat, even to pull
weeds from their gardens. Kathy cannot help but feel amazed and inspired
by her husband's "craziness", his intransigence, his stubborn
refusal to give in to the disease. So she refuses to give in either, relentlessly
following what she calls "the maze" of treatment options online,
on the phone, and in consultations with doctors. And she prays all the
time, her prayers intermingled with those offered by family and friends.
She says she will keep pushing until the day when he no longer can. She
hopes it doesn't come to that. Voice breaking, she says, "I just
don't want to lose him."
We will keep you posted on this determined couple.
*** POSTED JULY 12, 2002 ***
An Update -- 4/23/03
I wanted to tell you that Keith's oncologist got the approval to use
the Alimta for Keith in Dec.2002 and he has had 5 treatments for the Peritoneal
Mesothelomia. Today the GI Surgeon who was the original one to find the
cancer in March 2002 did laproscopic surgery and found that the tumors
are 50% reduced. Keith had been started on Gemzar & Cisplatin in May
2002 which he received until the end of August. He had laproscopic surgery
done then and it was found that the tumors were at that time 50% reduced.
But because Keith was having such an awful time tolerating the Cisplatin
the oncologist decided to just try the Gemzar. So after 2 1/2 months of
that he had another laproscopic done and the results looked the same from
the surgery in August.
The oncologist gave Keith a few months off to recuperate, while he was
going for the OK to use the Alimta. All of the laproscopic surgeries have
been done by the original GI Surgeon as the oncologist feels that he was
the one to know what it looked like at the start and would be the best
to judge on the progress. So, if my math serves me correctly the tumors
are 75% reduced from when they were first discovered which gives me great hope.
Thanks again for your e mails I really appreciate them and please feel
free to let others know about Keith's progress with the Alimta. It
seems to be much more gentle then some of the other chemotherapy drugs
out there and look at the results we have so far.
Kathy Marshall
An Update -- 5/29/03
In a recent update from Kathy, she advised that Keith's doctor had
decided to add Carboplatin in conjunction with his Alimta. Previously,
Keith had been taking Cisplatin with the Alimta. He had his second treatment
using the Carboplatin/Alimta cocktail last week and he seems to tolerate
the Carboplatin much better. He still has a rough period for three or
four days after his treatment, but he quickly rebounds and gets back into
his daily routine.
Keith's doctor advises that after two more treatments he would like
Keith's GI Surgeon to perform laporscopic surgery again. It will be
the third surgery for Keith. Chemotherapy and surgical invention have
reduced Keith's tumors by 75% and they are optimistic that this treatment
cycle will rid his body of these hideous tumors. Kathy prays for this
miracle every night.
It will be a busy summer for the Marshalls. Kathy's parents are coming
to visit in July and hopefully her cousin and his wife from Montana will
be joining them. If Keith continues to stay on the same recovery path,
they hope to travel to Phoenix, Arizona in October to visit their friends.
We will continue to keep you posted on this determined couple.
An Update -- 5/ 17/04 (From Kathy)
Hi,
It's been awhile and so much has gone on around here. Keith started
the Alimta Jan. 2003 and took that for 4 treatments and then he had laparoscopic
surgery and it looked like it had reduced the tumors.
We completed 5 treatments of Carboplatin with the Alimta for 5 treatments
and had laparoscopic surgery again and the results were wonderful, the
size of sesame seeds was what was left and maybe about 10% was all that
was left. He had his last treatment Sept. 2003, so by now he is feeling
better, getting his strength and stamina back and just generally feeling good.
We went to MD Anderson in Jan 2004, Keith's oncologist wanted us to
meet with a Dr. Brown and hear about this treatment that they do. They
go in and peel away layers of the tissue in the peritinum and then do
a chemo belly wash. Well, we went and met with Dr. Brown and a surgeon,
heard what they had to say and Keith said "No thank you". It
is pretty radical and very hard on your body and he just did not feel
that it was the right thing for him, especially right now.
One thing that they did mention was taking Celebrex, which is usually used
for arthritis but they thought that it could keep the blood flow from
the tumors. So, we told the oncologist that and he started Keith on it
right away. On March 31st Keith had his 8th laparoscopic surgery in 2
years and everything is still the same as it was back in Oct 2003, small
sesame seed size and no new growth. I was sitting in the waiting area
with Keith's sister, her husband and 2 of my very good friends who
had showed up to lend support. When the surgeon came out and told us that
I could not hold in my happiness, I just let out a shout of "YES"
It was 2 years ago on March 13th that Keith was diagnosed with this and
after reading about this disease on the internet I really did not think
that he would be here 2 years later.
I just thank God for getting us to a wonderful oncologist, getting the
OK to use the Alimta (I think the Alimta and Carboplatin) really made
a difference and for all the wonderful people we have met along the way
on this journey we have taken. Keith is on so many peoples prayer lists
that, that had to make a huge difference, I just really feel we are truly blessed.
One night Keith was really depressed about this whole thing as it really
is hard to live life with something like this hanging over you. I sat
down with him and said "Ya know, I try to look at this as having
our glass not half empty but half full. Think of this, at the first sign
of a problem your Internist sent you straight to the hospital where after
3 days you were diagnosed, not everyone is this lucky. You got a wonderful
Oncologist who doesn't have an ego, he is always looking for other
avenues of treatment and looking to others for help if need be. Your surgeon
is wonderful, you really like him and even though him and your oncologist
don't work together the oncologist doesn't want you to switch
to someone else because he was the first one to see what was going on
inside. We have the support of so many people and we have reconnected
with old friends, that is wonderful just by itself. " After this
talk Keith seemed to feel better about things, not to say that once in
awhile he doesn't get down about things but I think it helped to put
things in a better perspective.
On May 24th we are taking a vacation to London England. I decided in Nov
of last year that we had always wanted to go there and said to myself,
what are we waiting for? So, I booked everything and gave it to Keith
for Christmas. He has always wanted to go to England and drink beer in
a pub, see the tower of London and go to the flea markets that they have
all over. We are getting more excited as the time draws near, I'm
getting more nervous as I am not that fond of flying especially over an
ocean for 6-7 hours.
I had a nice time in Washington DC. I did get to meet with Senator Kohl
and felt really positive about that meeting. He really seemed to listen
to us and asked us questions, I brought up that my main concern was that
there was no money for research and that really needed to be addressed.
I asked him what was going to happen in 15-20 years when the people of
New York City started to show symptoms of this disease because the twin
towers were loaded with asbestos. What about the children that live there
and the "Heroes" of 911, what will we tell them when they come
to our medical centers for help and treatment "Sorry, we didn't
think about that?" At that he looked at his assistants and told them
to look into that, they all seemed startled about the possibility that
the twin towers had asbestos in them. I knew because I read an article
in a medical magazine and that Dr.s in that area were quite concerned
about this potential problem. Even now people are having problems breathing
the air in their buildings because no one has thought about cleaning out
the vents and heating/cooling ducts. It is a scary thing that asbestos
could be just circulating through the buildings all the time because they
have not cleaned the ducts out. Anyway, I had a good time and felt good
about the experience and told them if they wanted me to come back another
time I would. I know that this fight is probably not over so if I can
help I will. Some of the people that Keith works with know Senator Kohl
and they all emailed him, some even called him (Keith works for the Milwaukee
Jewish Federation). They have been so supportive through out this whole thing.
Well, I think I am done, have a wonderful summer.
Kathy
An Update --
4/5/05 (From Kathy)
This is going to be the hardest email I have ever sent but I promised to
keep all of you informed so here goes. The week we were in NYC March 8-11,
that is when they did a CT Scan and had gotten blood out of Keith's
abdomen ports. The CT Scan looked as if it showed more disease and that
the chemotherapy solution was not getting to the areas that it needed
to but was pooling. The reason it was pooling is because Keith has so
much scar tissue from previous surgeries that it actually was catching
the solution and keeping it from getting to all areas in the abdomen.
So, we went back the week of March 22nd and Keith had a CT/PET Scan to
confirm that and they discontinued the chemotherapy treatments. Dr. Taub
said when the chemotherapy pools like it was doing it could actually cause
more damage to the surrounding tissue and we don't want that. He suggested
that Keith have conventional IV Chemotherapy. He had already called and
spoke with Keith's Dr. here in Waukesha and talked about using 3 different
chemo drugs.
Keith had an appointment with his Dr. here on March 29th. Keith and Dr.
LeMarbre made the decision to not have any more chemotherapy treatments.
Dr. LeMarbre spoke with Keith about a quality of life and the fact that
these 3 drugs not only would make him sick,fatigued and all of the other
things that comes with chemotherapy it also had a small probabilty of
doing much good. He said that it seemed everytime Keith had chemo treatments
the tumors came back stronger and more resistant to the next round of
chemo. Dr. LeMarbre has asked myself and Keith's sister, Candace to
look for treatments of Gene therapy with no chemotherapy involved. Keith
is just so tired of feeling so bad that he would like to gather some strength
back and hopefully have a nice summer for a change. Keith still needs
to get the ports taken out of his abdomen and that will be done here in Waukesha.
Keith seems to be at peace with his decision and therefore so am I. It
is not easy and as I told him "I support your decision but I'm
going to have some bad days". But it does seem as if a huge burden
has been lifted off his shoulders. Now we are going to just enjoy each
other, family and friends. Maybe do some traveling and see some things
we always said "When we retire I'd like to see that" I have
inquired about retirement, but at this time I am not going to make any
big decisions like that. And, Keith needs to gain some strength before
he could travel and enjoy it. Keith also applied for Social Security Disability
this past week, so he will not be returning to work.
I ask if you would all keep Keith in your prayers and I thank all of you
for your support and love that you have shown us both.
God Bless all
Love
Keith & Kathy
Keith Marshall passed away on October 9, 2005