CANCER Close to Home
Largo, Florida: 04/05/07:
I have lost the love of my life... My wife Dolly. She was my
companion, confidant support team, friend, sunshine,
smiles and all the good things that life together offers. It came
quick, Ovarian Cancer is quick.
I asked her on a scale of 1 to 10 how does she feel? She
replied: "an 11". I took her to the ER at Midnight.
She beat Ovarian Cancer, aka "the silent killer", the last time (almost four
years ago) in 2003 and it has reared its ugly head again. Four hours after
arriving at the hospital, we had the news. The doctor in the ER said the CT
scan showed masses again, good sized masses. They put her in (Morton
Plant
Hospital in
Clearwater)
immediately.
What failed?
I asked her attending physician what happened. All of her screenings over
the past three and a half years based on the CA-125 tests showed no signs of
any problems…
CA-125, cancer
antigen-125, is a protein that is found at levels in most ovarian cancer
cells that are elevated compared to normal cells. CA-125 is produced on the
surface of cells and is released in the blood stream. It’s a simple blood
test from a sample that assesses the concentration of CA-125 in the blood.
Here’s the problem: The CA-125 test only returns a true positive result for
about 50% of Stage I ovarian cancer patients. The CA-125 test is not an
adequate early detection tool when used alone, and the test has an 80%
chance of returning true positive results from stage II, III, and IV ovarian
cancer patients. The other 20% of ovarian cancer patients do not show any
increase in CA-125 concentrations.
The CA-125 test is not
recommended for use alone as an early detection method. The rate of false
positives is very high, and there has been no data concerning change in
mortality. The CA-125 test should not be used alone to detect ovarian
cancer, but rather with transvaginal sonography and rectovaginal pelvic
examination for greater accuracy. Stage II, III, and IV ovarian cancer
patients undergo pelvic surgery and are placed on Taxol and platinum based
chemotherapy.
Surgery
After a week of needed fluids, a little building up and pre-care, (plus our
surgeon) had a loaded schedule, they wheeled her into surgery. It was
Good Friday and even this Jewish husband, liked the name of the day. Maybe
it really could be good this time. She went into a marathon eight hour
operation to remove the Ovarian C cancer that had infiltrated south to
north. They took out a lot. This is called “de-bulking”. It’s a
cold harsh word,
but needed for this is a nasty, virulent monster that has difficult
attributes that defy some convention. Surgery allows accurate
appraisal of the tumor, an accurate diagnosis, and remove or de-bulk
as much tumor mass as possible leaving less for the chemotherapy.
Aggressive removal of cancerous tissue is associated with improved chances
of survival. Sometimes.
The
Enemy
Ovarian cancer
is the most fatal of all cancers involving a woman's reproductive tract.
Most ovarian cancer develops after
menopause; half of ovarian cancers are
found in women older than age 63. Only 19 percent of ovarian cancers are
diagnosed at an early stage, when the disease is confined to the
ovary and is most easily treated. Women
diagnosed in the early stages have a 90-95 percent chance of surviving at
least five years. About 76 percent of women with ovarian cancer survive one
year after diagnosis, and 45 percent survive five years after being
diagnosed. The survival rate drops as the stage of the cancer increases,
with a less than 14 percent five-year survival rate in women whose cancer
has spread beyond the abdomen. Younger women (below age 65) have a better
five-year survival rate than older women.
An estimated 20,180
American women will be diagnosed with ovarian cancer in 2006, according to
the American Cancer Society, and about 15,310 will die of the disease.
Ovarian Cancer Whispers - so listen...
-
Watch for Pelvic or Abdominal pain or
discomfort
-
Vague but persistent gastrointestinal upsets
such as gas, nausea, and indigestion
-
Frequency and or urgency of urination in the
absence of an infection
-
Unexplained weight gain or weight loss
-
Pelvic or abdominal swelling, bloating or
feeling of fullness
-
Ongoing unusual fatigue; or unexplained changes
in bowel habits.
-
Pain during intercourse
-
If symptoms persist for more than 2 weeks,
ask, NO better yet demand your doctor do a
-
Combination
pelvic-rectal exam
-
CA-125 blood test
-
Trans-vaginal
ultrasound
-
A Pap Test WILL NOT
detect ovarian cancer.
Two other factors
might add probability to this occurrence. Some doctors are looking at women
who have not had children, and approaching menopause, also frequency of
hormonal migraines. Dolly had a history of hormonal migraines which were
dismissed and treated with the usual take two, go into a dark room and sleep
it off. She never had children. Two strikes, two was enough.
An excerpt from a Newsweek Article which strongly recommended the above
approach be done by a competent physician because:
In most cases, the cause of the symptoms will
not turn out to be ovarian cancer. But that doesn't mean
the effort was wasted. "Some may be symptoms of other types of cancers, like
colon or pancreatic, or bowel inflammatory disease, or something less
serious, like a urinary tract infection," says Goff. But all of these things
also need to be treated. What we don't want is for women and doctors to just
blow off these symptoms as nothing to worry about."
Part of the pressure to
publicize these early symptoms comes from the survivor community, many of
whom are angry that their early complaints were ignored for too long, Goff
says. For example, in one follow-up study of women eventually diagnosed with
ovarian cancer, Goff found that 12 percent were initially told that their
symptoms were simply related to "stress"; another 15 percent were told they
had irritable bowel disease; 6 percent, depression. Ten percent were told
that "it was all in their head," says Goff. "Six months later, they all
discovered they had ovarian cancer, and not surprisingly, they're up in
arms. That's why we're trying to make a public announcement about this to
alert both women and clinicians of this new research."
Goff adds an important
caveat: sometimes, even the best doctor won't be able to find evidence of
ovarian cancer the first time you're checked. If symptoms persist or worsen,
make sure you keep bringing up the topic with your doctor. It may take
several tests to detect cancer. If you're afraid you'll be perceived as a
hypochondriac, keep in mind that many women have saved their own lives
through their persistence. If you feel your doctor isn't responding
appropriately, get a second opinion. But whatever you do, don't ignore what
the silent killer might be trying to say.
Reality
I'll jump
around a bit but I would be remiss if I didn't share things I have learned
about this situation.
Ø
Not all Hospitals are the same:
Morton Plant Hospital:
The finest group of Doctors, Nurses and Technicians I have ever met with a
true Empathic Patient Care Philosophy. (EPCP) Incredible communication
between Dr's, Nurses and Patients, it just amazed me after I was in another
hospital for five days in October and was contemplating using S.E.R.E
(Survival, Evasion, Resistance and Escape) tactics to get the hell out. My
minor story...Three days I complained about a port (with the needle made of
plastic) the EMT's had put in a painful place (my thumb) that was no longer
needed and it was swelling bad. On the fourth day I went for a walk to the
nurses area, removed it, threw it in the red can and washed it down with a
anti- bacterial solution and put a glob of triple antiseptic on it, and a
band-aid. I would of escaped BUT the bed sheets weren't long enough to
reach the ground from the fourth floor. What a difference in hospitals!
Ø
Not all tests are accurate or true: Though she was on Marker CA-125
testing and maintenance this form of Cancer in some cases can stay hidden
till it's too late. (thus the "silent killer" name) In a certain percentage
of patients (like my wife) we had false negatives. It was growing, it just
didn't give off clues till it was almost too late. CT and PET scans are
more indicative but then we get into the insurance game and coverage.
Ø
Not all Doctors are the same: I am fortunate to have had one of the
finest OB-GYN/ONCO teams in the country who now recommend CT scans and or
PET scans in addition to the Markers. Can't rely on Marker CA-125's alone.
I noticed something, good doctors have good doctors for associates. Bad
doctors have many outside interests. The entire team performed for a
flawless performance. That's why she's home now. It's just a waiting game
now because the chemo takes so long and this monster can grow very quickly.
All of her physicians are on top of things.
Ø
Tough Love in the Hospital: Tell the nurses, to cut off the phone,
mail and visitors. I know this sounds harsh. Imagine lying in bed with
tubes dangling exhausted by the constant interruptions and procedures by
the staff, then six people come into see you and you put your best face
forward and answer the same questions over and over again.
"How do you feel and what happened?" I took the mail away, got rid of the
flowers (did anyone think the smell of flowers is helping her allergies?)
and the balloons that get in the way of the nurses. Add a dose of over
perfume, screaming kids visiting and you wonder what were these idiots
thinking? Double rooms are small enough. I wanted her to FOCUS on getting
well, listening to her Dr's and nurses and coming home.
It worked. They said no reason to keep her there, she's about three days
ahead of schedule and they attributed most of it to rest and not being
bothered. It was tough on some but the best thing for her.
Ø
Make it easy on yourself: Lean Cuisine, Stouffers and others have
lo-cal meals perfectly suited for a smaller appetite recovering from the
surgery and the use of paper plated, plastic knives and spoons, paper cups
really make it easier on the caretaker ( ME). It gives them variety,
choice, and fast cooking, throw away trays and the microwave needs no
cleaning. It's also safer for the patient, lower calories and lowered chance
of contamination.
Back to the FIGHT
Sometime in APRIL and I feel like I am on a fast track. I'm watching days
meld together. It's been five days since the three surgeons, and a very
long operation took place (8.5 hours) and she's doing as well as can be
expected. She's got color back, being weaned off the drugs and they'll try
to get her up walking. And I suspect trying to throw her out, you know
insurance companies. I guessed right. No fooling around here. Drains out ,
some walking, some easy food and guess what, you go home or a rehab joint!
On the sixth day she came home, my choice. Good old mil-spec training. We
take care of our own, checking vitals, cooking and the occasional dressing
change. My wife won't be going to rehab, I won't let her. It had to be a
miracle, all the prayers and well wishes do make a difference and being home
with great friends and neighbors put a smile on her face all day and she
feels better already.
Bless
the Caregivers
The good ones. Few and far between but the best care is love based. Many
home health care providers really need to look themselves in the mirror.
They were hours late, failing to show, failing to call, forgetful, and incompetent. When I
saw they were doing nothing, I dismissed them. One hour of questions,
vitals and a 200.00 dollar bill, enough...we went solo. I had lots of first
aid training many times with different organizations and felt I could do it
better. Their "nurse" came finally, albeit totally unprepared and I had to
supply her with the wound dressings and gloves. What did I need her for?
Oh, so that the forms were properly filled making sure they got paid? I
called the service and fired them. What a joke.
It's tough being a caregiver and trying to keep the house/business going at
the same time. She came out of the hospital twenty pounds lighter, do the
math, ice only for ten days and the surgery. Again read the parts about
paper plates, cups and "Lean Cuisine", lots of juice, and pain killers.
Tylenol PM helps too. Nights of worry and anguish vanish with this over the
counter drug and got her off the Vicodin faster. It got ME a few hours
sleep too. After a few weeks we are looking forward to the Chemotherapy as
another stage in the recovery and to get it over as quick as possible.
Chemotherapy
Sometime in May- June, it all seems to meld together but my baby takes it in
stride and doesn't complain.
After what seemed like days of Dr. visits and tests, the Chemotherapy
started.. I failed chemistry twice but I got a brush-up course on the web.
Yes everything you heard about it is true; some feel the cure is as bad as
the ailment. Nausea, body aches, pain in joints etc. But it saves lives.
It's simple enough, drugs like TAXOL, are slow dripped into the body and
they go after the rogue cells that the surgeon can't possibly see or
locate. It's sort of like DNA matching; the drug looks for anomalies in
cells. These usually are the rogue loose cancer cells. (This is a simplified
explanation)
Chemotherapy destroys cancer cells by preventing them from growing and
dividing rapidly. Many normal cells also divide rapidly and are damaged by
Chemotherapy. These include but not limited to hair follicles, red and
white blood cells, platelets for blood clotting, mucous cells in the
gastrointestinal tract. Side effects are anemia, fatigue, dizziness,
shortness of breath, nausea, vomiting, diarrhea, low white count, resulting
in infection, loss of hair and so forth. Like I said the cure may be
painful.
Dolly was given Taxol since it worked before and Carboplatin plus blood
monitoring utilizing injections of Neulasta for the white cells and Aranesp
for the red cells. The method of insertion selected by our doctor was
intravenous injection (IV). It can also be administered directly into the
abdominal cavity, orally and intramuscular.
The interval per
treatment was based on a 3-week cycle which allows normal cells to recover
from the effects of the drugs. The nurses call these combinations of drugs
"cocktails". Sometimes they contain other drugs to alleviate the side
effects. The cocktail or mixed chemotherapy helps to increase the
cancer-fighting potential of treatment and also helps to keep cancer cells
from becoming resistant to individual drugs.
Influential factors
affecting the type of chemistry are the type of ovarian cancer, how the
patient's responds to the drug and recovers from it, and the health of the
patient. Usually monitoring of the blood cells ( counts) accompanies the
treatment so that the helper drugs like Neulasta and Aranesp may be dosed
based on counts.
TAXOL is an
incredible story in it's own right as it represents all that is good about
NOT killing the rain forest. It's made from the bark of a tree discovered
in the 60's and finally was chemically synthesized a few years ago. It's
fascinating and gives you an understanding of the process needed to perfect
a cure that may start as something insignificant in the forest. My wife's a
tree hugger. She loves nature and nature pays her back and I will put her
to rest amongst the trees she loved so much in the Great Smoky Mountain
state Park.
BUT, like in any scenario, what works in one case may not work in another.
Just recently an intensive study indicated
Taxol does not work as well for the most
common form of breast cancer. It helped far fewer patients with breast
Cancer than has been believed.
If further study bears this out,
more than 20,000 women each year in the
United States
alone might be spared the side effects of this drug or similar ones without
significantly raising the risk their cancer will return. That would be
roughly half of all
breast cancer patients who get chemo now. The differences
were revealed by a new analysis of a study done in the 1990s, using modern
genetic tools that were not available at that time.
"The days of 'one
size fits all' therapy for patients with breast cancer are coming to an
end," Dr. Anne Moore of Weill Cornell Medical College wrote in an editorial
accompanying the study in Thursday's New England Journal of Medicine.
"Oncologists have a responsibility to their patients to be aware of this
report."
The original study
involved more than 3,000 women whose cancer had spread to nearby lymph nodes
but not widely throughout the body. This is the situation of about
one-fourth of the 175,000 women diagnosed with breast cancer in the U.S.
each year.
Researchers tested
adding Paclitaxel, sold as Taxol by New York-based Bristol-Myers Squibb Co.
and now also in generic form. They gave it after surgery to remove the
cancer and treatment with the chemo drugs Adriamycin and Cytoxan.
Taxol improved
survival and became a new standard of care. But the drug frequently causes
neurological side effects including numbness and tingling in the hands and
feet. In the original study, 18 percent of women had this problem months and
even years after taking Taxol. Even more worrisome has been the growing
evidence that some women do not benefit as much from chemo as others. Hayes
and other researchers wondered whether that was true in their Taxol study.
They retrieved frozen tissue samples from 1,500 of the original
participants, did genetic tests to better identify their types of cancer,
and discovered big differences in who had responded to the drug.
"We should have
done this a long time ago," but the tools were lacking and researchers now
have the advantage of longer follow-up of these women, said another senior
author, Donald Berry. He is biostatistics chief at the University of Texas
M.D. Anderson Cancer Center.
Berry is
reanalyzing another earlier Taxol study, and Moore urged other scientists to
do the same. With more evidence, "we can begin to use the biology of the
cancer to decide whether the chemotherapy will work" before subjecting women
to it, Hayes said. The typical four-cycle treatment with generic Paclitaxel
costs $7,000 or more, including infusion fees that doctors charge. Insurance
typically pays most of this.
For now, many
doctors will be reluctant to skip Taxol or other chemo, said Dr. Julie
Gralow, a cancer specialist at the University of Washington School of
Medicine. Some may fear lawsuits if the cancer recurs and the chemo wasn't
given, she said. "It's just so much easier to give the chemotherapy and
know you've been super-aggressive."
Another part of her
"cocktail" is Carboplatin. Carboplatin is in a class of drugs known as
platinum-containing compounds; it slows or stops the growth of cancer cells
in your body. The length of treatment depends on the types of drugs you are
taking, how well your body responds to them, and the type of cancer you
have. It has side effects, it lets you know the drug is in you. The nurses
at the Cancer center always ask the patients how they feel, the standard
answer nausea and some pain and their answer is... " I understand, it comes
with the territory, the stuffs doing it's job".
You saw it on TV, the new drug Neulasta: Since
Chemotherapy works by killing
fast-growing cancer cells, there is a downside.
Chemotherapy can’t tell the difference
between cancer cells and fast-growing healthy cells, including red and
white blood cells. As a result, one of
the most serious potential
side effects of many types of
chemotherapy is a low
white blood cell count. The fewer
number of
white blood cells you have and the
longer you remain without enough, the more at risk you become for developing
a potentially life-threatening
infection. This is the reason for
Neulasta. It keeps the white blood cell count growing from the bone marrow,
on the other hand causes bone joint pain. More Tylenol. Then the
pendulum swings and the red count gets effected so you need a red cell
builder called Aranesp which is incredibly expensive. It doesn't stop
and as you will find out how critical the red blood count is.
A
Knockdown
She has pain in the groin and a discharge. I tell the Chemotherapist about
the symptoms and he orders a CT scan as usual Friday late. Why does
everything go wrong on Friday? The Chemotherapist meets her Internist in
the hospital on the weekend doing rounds and they go over the scan. We get
a call Monday at 11:AM and our Internist tells us one of her body cavities
has developed an abscess. The Internist gets on the horn, I mean this
Internist is fast, and takes a personal interest within minutes we are
scheduled to see a surgeon from our team who is familiar with the case. The
thoracic surgeon who assisted our two oncologists during her marathon
operation.
Our appointment was at 2:PM but he had a heavy patient load that day and
finally he got to see us at 4:PM. We were grateful he got us in on short
notice. Also this was part of the Morton Plant - Mease group so he had
access to all her files by computer. (Read Again- Good Facility) Before
long he and I are looking at the CT scans taken Friday. Only minutes after
we arrived. He shows me the area. He is used to working with people who
take their care-giving tasks seriously. This becomes important later. Thank
goodness for the good things computers do.
Two hours later she was admitted for day surgery to drain the abscess. An
abscess is a infection and with diminished white blood cells can be
extremely dangerous. I leave the pre-op and go to the waiting room. 9PM I
see her surgeon walking the hall and I ask him "how it went". He told me,
he hadn't scrubbed yet because they only had one anesthetist on staff at
night and they had a unannounced childbirth, a skateboard accident and a few
other unscheduled events that occurred and got booked ahead of us. Also
they had to do the usual paperwork and no one was there on the other end so
we got bumped.
I wondered why everybody congratulated me in the waiting room when the baby
was born, I was the only single guy there, and I explained it wasn't me.
Maybe forty years ago, it could of been me.
They released her
at midnight and I took her home. The rest of the month we had a long
session with keeping the wound open to drain and finally after much
frustration and a few foul words I threw out the home health care people
again. Our provider in conjunction with the surgeon arranged the short
course at the Morton Plant Hospital Wound Unit where I was shown how to do
the procedure watching a wonderfully skilled and empathetic nurse do the
packing procedures. I graduated and after that I am once again her
caregiver. After four weeks the wound has healed and the Dr. said I did a
great job. We beat the bad guys again...
Round Two
Handling this type of cancer is breaking things into small units and
completing these small units expeditiously and with minimum effort. For
example after each Chemo the patient sometimes feels better since part of
the regimen is the "cocktail or blend of goodies" that increase the patients
strength with steroids, pain killers, etc. albeit for a short while. After
Dolly's Chemo regimen, I would take her shopping for a few things carefully
monitoring the pace, and watching her constantly for fatigue or pain. To
someone housebound just shopping at Publix makes them feel closer to normal
again. It did get to be shorter and shorter shopping sessions and tougher
as the Chemo wore on and she weakened.
Ten Seconds Till the End Of the Round
Dolly complains to
me and the Chemo RN that she been experiencing shortness of breath. Part of
the de-bulking was in an area under the right breast in the diaphragm. Our
Thoracic surgeon handled that part of the operation and constructed a false
diaphragm of tissue. Basically a reconstruction of the area so we felt that
maybe the wound was scaring and scar tissue can hurt.
I wish it was that simple. After a hastily ordered PET scan of the chest the
scan showed Cancer has peppered the inner wall of the chest.
The Taxol, Carboplatin combo was not infinite on the Ovarian Cancer cells.
They had passed in the structure and a new Chemo called Topotecan was to be
substituted. Topotecan is made from a rare flower and is one of the second
generations of chemotherapies that are used when Carboplatin does not take
effect. The problem is it is very toxic and it was decided to break the dose
into three parts given every Friday rather than the whole dose given every
three weeks. The only other options were those in trials in Greece and
other parts of the world. In the second generation Chemo's the FDA has only
approved a few. It is still new science.
"Topotecan appears to extend progression-free survival compared with
treosulfan in patients with platinum-resistant ovarian cancer. However, the
benefit appears to depend on the time to relapse after primary therapy, and
Topotecan may be more toxic than treosulfan, according to the findings of a
prospective randomized trial".
"After initial
aggressive surgery and standard chemotherapy, most ovarian cancer patients
will develop relapse and become candidates for further therapy, but a
standard is not yet defined," said Werner Meier, MD. ,
The hydrochloride salt of a semi-synthetic derivative of camptothecin, a
cytotoxic, quinoline-based alkaloid extracted from the Asian tree
Camptotheca Acuminata, with anti-neoplastic activity. Usage with English
translation: Stops the bad cells from multiplying by altering the DNA.
The first week goes Ok but the breathing is getting more difficult. After
chemo Dolly wants to go home, not shop and after passing a Chick Filet (her
favorite fast food) and not wanting lunch, I get nervous. This regimen
requires twelve weeks of treatment and her breathing is getting worse plus
she's getting a yellow jaundiced look.
Chemo blood work basically aims at the white blood count, the red blood or
hemoglobin. Hemoglobin is a protein in red blood
cells that carries oxygen. A blood test can tell how much hemoglobin you
have in your blood.
The
Normal Values hemoglobin:
-
Male: 13.8 to 17.2 gm/dL
-
Female: 12.1 to 15.1 gm/dL
Lower-than-normal
hemoglobin may be due to:
A complete blood
count, called a CBC gives important information about the kinds and numbers
of cells in the blood, especially
red blood cells,
white blood cells, and
platelets. This helps your doctor
check symptoms, such as weakness, fatigue, or bruising, or to diagnose
conditions, such as
anemia, infection, and many other
disorders.
White blood cells protect the body against infection. If an infection
develops, white blood cells attack and destroy the bacteria, virus, or other
organism causing it. White blood cells are bigger than red blood cells but
fewer in number. When a person has a bacterial infection, the number of
white cells rises very quickly. The number of white blood cells is sometimes
used to find an infection or to see how the body is dealing with cancer
treatment.
Red blood cells carry oxygen from the lungs to the rest of the body. They
also carry carbon dioxide back to the lungs so it can be exhaled. If the Red
count is low (anemia), the body may not be getting the oxygen it needs. If
the count is too high, there is a chance that the red blood cells will clump
together and block tiny blood vessels (capillaries). This also makes it hard
for your red blood cells to carry oxygen.
Looking back at the
chart, Dolly's Hemoglobin which should be at 11.5 to 12.00 was in the
preceding three weeks: 8.9, 8.4, 7.9. Very low and she was advised she soon
would need a transfusion of red blood cells called a "packed cell" or blood
with extra red cells to make her blood work again.
The
Second Week - ARANESP Shipment Lost
Dolly had Chemo on Friday after an extremely irritating morning because her
medications scheduled to arrive by 11 am via UPS did not arrive. This was
because they failed to ship on Wednesday, and then the shipping department
failed to mark the package “before 11:00AM” on the next day service. It was
marked wrong by the Aranesp supplier. The Care Management people get a
better price because they buy in volume and wanted to save a few dollars. I
understand that. Except when the system fails.
We tracked the driver down and got the Aranesp medications by one o'clock. She was unusually agitated by the screw-up of the delivery, nervous
and scared. She was out of character. Totally out of character and for her
out of her quiet reserved reality, one minute OK, the next minute not OK.
At her exam before getting the Chemo her red blood count was down to 7.9, as
it was brought up again, it had been diminishing each week, 8.9, 8.4, 7.9.
That explained her yellow jaundiced coloring, so they scheduled her for a
transfusion on Monday AM. Dolly had once said that I am an
empath. I see and hear things others don't. It's like what folks call
a "sixth sense". After flying for twenty seven years, I call it
situational awareness.
This is no good, I had bad vibes… I tried to get her type-matched on Friday but we
could not get her to the hospital and they do not type-match after
3:30 pm. I was ten miles
away in FRI afternoon traffic and Dolly is a very nervous person in traffic,
she is an ardent back-seat driver...we got her out of Chemo at 3:13. 17
minutes, too far, too much traffic and an accident certainly wouldn't help
things. We decided she had enough for one day and she wanted to just go
home.
After repeated Chemotherapy, the red blood cells lose their ability to
reproduce even with the kicker Aranesp. She needed a transfusion. Saturday she
acted strange, very up and down, told me one minute she was better and yet
didn't want to be alone. She actually went for a ride with me in the car to
pick up some parts. She insisted on going and she soon fell asleep in the
car. Then she awoke, then asleep and I said to her: “I told you this was too
much and she would of been better off home with the sitter I had arranged”.
No she said," I wanted to be with you". She nodded off again, I cancelled
the second half of the trip, turned around. "She said it again, she
wanted to be with me and didn't want to be alone". I rushed her home, i
should of rushed her to the hospital.
Latter that day she went to bed after again a little up and down and
still fidgety. This didn’t alarm me because I had seen it before after Chemo, the
cocktail of “feel goods” I mentioned that perks the patient up a little…. She
was nervous, I gave her a Benedryl in case this was an allergic reaction and
she calmed down and fell asleep.
I got up Sun AM and surprisingly she had gotten up ahead of me and she made
breakfast which is unusual because she doesn't function well when she gets
up due to her condition. She's zooming around the house which really
startled me.
She said she was going to take a shower. Fifteen minutes later, I checked up
on her. She didn't come out so I went in to check on her. After her dose of
drugs at Chemotherapy on Friday she was never the same, four people who live
in our condo saw us coming and going and later commented about her "look ,
reaction, composure, etc." Something went wrong and I didn't catch it soon
enough.
I called to her in the shower and she didn’t respond. I grabbed the door
open and she was laying on the shower floor in a pool of blood, delirious,
partially coherent, but definitely not in her mind and saying she can't take
it anymore.
I called the Paramedics and screamed for my next door neighbor and she
and her husband rushed right over. She spoke with the paramedics with directions I applied
first aid, all that I could... The paramedics showed up and transported her
to the TRAUMA center at Bay Front Hospital, a LEVEL TWO center. The trauma
surgeon operated from sometime around 9:00 or 10:00 till 3:00 PM. The trauma
Dr removed three additional masses (Cancer) from the abdomen. Dolly in
addition had a herniated twisted colon and other complications. Dolly
received two pints of blood. There were peppered masses throughout the lung
cavity in the inner walls which showed on the last PET scan. The Chemo is
not working at this point. We are done with Chemo. Enough Chemo to stop this
onslaught would stop an elephant.
Trying TOO HARD to Find the Cause
Her behavior and temporary dementia condition (I'm convinced) was caused
by:
A Lack of oxygen to the brain by the diminished hemoglobin counts. The
weakness of the breathing might of been added to by the problems with the
diaphragm she was having and also deterioration of the chest wall. She was
slowly asphyxiating. There is another scenario which is the possibility of
another tumor in the brain. She should of gotten a PET scan of the brain as
soon as she was admitted but this was not the case. They had to save her
first It's a mote point now.
But the one thing for sure is the strength of this Cancer. It is the mother
of all bad things. Months and years of debilitating side effects with too
many medications. There are so many pills I don't even know what half of
them were for, so I made prints of the bottle data and had my own glossary
of meds for her. Most were for the constant nausea and side effects of
twenty weeks of Chemotherapy and Surgeries. Adding things up there was a
total of 32 hours under the knife in the past four years…too much for
anyone…
I saw her after surgery last night in the ICU and she is quite well drugged
because of the severity of the operation and the fact she has sustained a
lot of damage. Three of the Physicians attending to her are not affiliated
with this particular hospital. And one of the problems is once again I have
to change doctors. I believe they call this switching horses mid-stream and
it serves no good. Nevertheless her Internist, the Trauma doctor and her
Chemo doctor all with privy to the CT and PET scans have counseled me on the
next step...... I know what it is and it is in the best interests for
Dolly. The lung cavity is just not working. She is getting weaker each
day.
Please, God, just let me do what I have to do in peace, this is not easy and
if I could take her place, in a heartbeat, she is the only thing in this
world I have deeply loved more than life itself. She taught me the meaning
of the word...
She could not speak because of all the tubes and she circled the air with
her finger, she wanted to write something. She wrote: "I love you and all
those helping me". Then she wrote, "the Chemo and all the drugs are killing
me". I fell apart, I couldn't handle it anymore.
She can't breath without the re-breather. Several attempts were made to help
her breath. Her Dr. thought it was the proper time for her to go, as did
most who were aware of her extended condition fighting Cancer for better
than four years. The hospital Psychiatrist, the Chaplain, actually three of
them tended to her, a Baptist, a Methodist and a Jewish rabbi, the Dr. of
Palliative Medicine were involved. Professional medical care was given,
and sophisticated symptom relief provided.
Hospice Care 101:
The patient and family are both
included in the care plan and emotional, spiritual and practical support is
given based on the patient’s wishes and family’s needs.
Those involved in the process of dying have a variety of physical,
spiritual, emotional and social needs. The nature of dying is so unique that
the goal of the team is to be sensitive and responsive to the special
requirements of each individual and family.
Nothing is more important to me now, I have to do what's right for Dolly. I
can't be that selfish in trying to hold on. It's not about fighting. In a
war you see someone go down, you fight harder because you could be next.
With cancer you fight till the quality of life, the only reward is still in
sight. Take it away and there is nothing but pain and sorrow to live with.
Dolly told me she had enough... she knew the time...
I have copy of her Living Will and was asked to sign the form called a DNR.
(DO NOT RESUSCITATE). It was just about five O clock. People were going
home to loved ones. I was going home to an empty home and a torn heart. I
kissed her good-by, told her I loved her, promised no one would ever hurt
her again, closed her eyes and I will hear her labored breathing the rest of
my life. She got scheduled pain relief and four hours later... It was
over.
Dolly passed at 9:18. The hospital called at 10:30.
The
Medical Machine and the Law
Or so I thought. At 12:30 in the middle of the night, the Medical examiners
office called me to tell me they were taking her body for examination. it
seems she came in through the TRAUMA side of the hospital and was listed as
having a wound. She had caused a wound in the area of her STOMA.
Florida
has strict laws.
That one minute that Dolly succumbed to hopelessness, deprived oxygen,
resulting in her mental state not being right means they have to do a
complete autopsy. As if five major and two minor surgical operations and
procedures, (one less than five days ago) tearing her body apart over
thirty two combined hours of surgery, office and hospital visits too
numerous to count, and very taxing Chemo, almost twenty weeks of poison,
exams, and check-ups weren't enough to kill her. They have to hurt her
again.
They made the
call from information from the staff. The Medical examiner told me they had
not contacted any of the Drs. that had seen Dolly or knew of the condition
of lowered blood levels , reduced hemoglobin, severe shortness of breath and
knowing the drugs weren't working. With her dying hand Dolly wrote about
her love and how the drugs were killing her.
She had to give up, there was no fight left in her. In her mind there was
nothing left to look forward to except maybe a little peace. The Cancer
won and the law part of the medical machine took the wrong corner in the
battle.
12:30 at night I made my case to the examiner. I got
nowhere. This is a travesty beyond anything I have witnessed in my life.
There is no dignity left here; no compassion; nothing to learn medically;
her organs will never go to another because the Cancer had spread.
I screamed, because no one had paid attention to what I tried to tell them
when she was admitted? I had all her medical records and history and would
bring them down to them. I was told they would solicit them on their own.
I
am wounded, deeply hurt. And the fighter in me starts to come out. I even
went as far as to grab a weapon and take things into my own hand. I wasn’t
going to let them hurt her again even if it meant doing something I might
regret the rest of my life. "I had told her no one would ever hurt her
again" and even if it meant my life I didn't care.
There is no logical or compassionate reason to hurt two people
anymore, people who loved each other and one decided enough is enough and
the other agrees. So I get on the phone in the middle of the night and call
her doctors. I called my attorney, I called anyone I thought would
intervene. They (no one will tell me) contacted the examiner and got a 24 hour hold
pending medical records. By morning
all her records will be checked and if the information is correct and
verified the examiner will cancel the autopsy. I pray the people at the
hospital do what is needed and get the records to the examiner on time. They
certainly didn’t impress me while I was there. Trauma departments are
independent of the hospital. Trauma doctors are as one non-trauma Dr.
described it 'adrenaline junkies". Their work is always on the edge
and prioritized.
The day drags on and I have a house full of friends, then the doorbell rings. It is a Police Detective from my
district. He is following up on a request from the Examiner to interview
the household. This too is routine. Like on COPS they have to visit the
scene. My neighbors who witnessed the event and helped me in the shower with
her and Dolly's friends all answered the questions and expressed grief at
her loss and total disgust at the treatment we were receiving.
He apologized for the intrusion, he was kind, understanding and
compassionate. He carefully explained this step was part of the law. He found
absolutely nothing wrong, there were two witnesses and immediately contacted the Examiner that this
was not anything that needed this attention. Four hours later the Asst.
Examiner called and said Dolly was ready to be picked up by the funeral
home. No autopsy and a genuine graceful apology for any hurting that may
have occurred, I thanked them profusely and smiled and broke down, I had
kept my word to her. "No one will hurt you anymore, baby".
I
loved my wife and more decisions have to be made: We did them together:
It’s a simple choice, cremation or burial.
We had decided jointly we both wanted cremation because of her debilitated
physical condition with more deep scars than anyone I have seen, the loss of
all her hair, and her further denigration by the Colostomy warranted this
type of closure.
She had a body fused with mesh, herniated areas and a twisted bowel causing
days after days of discomfort right up to the time of the 911 call. She
had pounds of flesh around her belly left from when organs were removed, yet
she maintained a smile and love for all of life. I could see her hurting
every day and still smiling though the frustration in her life getting
dressed day after day to see Drs. and getting poked, prodded, and scared.
She always had a smiling face for the Dr’s, nurses, neighbors and friends.
She wanted to be cremated so that it would kill every Cancer cell and hide
the scars they made on her body and soul.
Burial - I will take her to the secret place we loved and visited in the National
Park between Gatlinburg and Cherokee when the trees turn colors and a cool
breeze floats through the mountains. We have been together in the flat
tropical heat and humidity of
Florida for thirty years.
I will intern her in a place where twenty five or so years ago I told her I loved her in this spot and she
affirmed her love for me. I have the pictures of that day and that place.
I will bring her home soon...
This is what she loved and missed seeing the past five years while not
feeling well. This was the promise I had made. I will bring you home and I will always love you baby....
Helping others - Partially Jewish law (sometimes involved burning the
deceased shoes so that no one shall walk over another's path) and plain old
love for those who need a helping hand, warranted the next move. All of her
clothing, shoes and handbags were donated to CASA house and delivered with
in 48 hours. For those who do not know this is a charity and temporary
safe housing for women and children who have been abused and in many cases
have escaped an environment with just the clothes on their back and an
abuser right behind them. Her work clothes like pantsuits and
dresses will hopefully help another soul get started back in life.
That was Dolly's legacy, always thinking of others.
Her doll collection, nothing fancy but LOTS of THEM, like Beanies and stuff
were carefully delivered to the All-Children's Hospital in St. Petersburg so
that no child shall be without. The armed guard (some kids are there
because of abuse) asked me what I was delivering. I told him I'm the
"Jewish Santa Claus". Fortunately he was smart enough to know that
there is no such thing. I had to explain to him I worked the other shift,
the 364 other days of the year when kids needed a little love too. 2nd
mission objective accomplished, toy's delivered.
Fruit Plates, Baskets etc. - More than I could ever use or eat and
would of gone to spoil. So I dropped them off at the Nurses stations
that took care of Dolly both at Morton Plant and BayFront. The staff
at both hospitals did their best. They asked, "what patient was it for"? And I
said "it doesn't matter, it was for them to enjoy for helping my wife".
CLOSURE: It's time to bring her home:
It started by air from St. Petersburg, Florida to Chattanooga Tennessee via
Allegiant Air. Nice small airline, so small they charge for peanuts!
Four dollars a bag! Beautiful day for flying and things went smooth
even with the mandatory sneaker removal (Buy a pair of CROCS to travel in)
and the bag search (s). We landed in Chattanooga and I headed
for the reserved rental car which was not there. So they bumped and upgraded
me to a larger car which they did have after I threatened to seek another
supplier of fine automobiles.
I headed toward the
mountains and then I noticed the sun was leaving and clouds had started
rolling in. Six hours later it was rain, some sleet and snow depending
on the elevation. So much for my friends advice about the summer like
conditions. Things change very fast this time of the year in the mountains. I changed my itinerary and took the back door into Pigeon Forge.
I called friends and changed days and times to meet.
Going solo with some advise from local friends I trekked in the snow dust not as far as I wanted,
but found a fast moving creek
alive with power and movement, unusual since the drought has effected this
area too. This spot would have to do because of the weather.
In this comparable pristine spot, I released the knot holding the contents of the bag
and as they say "ashes to ashes, dust to dust". I returned her
to the 'Earth Mother". Three things struck me. Life is just a series
of events some planned and some coincidence. The rest are the
unexplained. First I watched the ashes divide and take their own path
in the stream as it rambled downhill. It was mixing the spirit
with the power of the mountain. Second it was raining and drizzling with
flurries just as it was years ago uncanny but the same day Nov 15th. The circle was complete
with time and weather. Third,
I slipped and landed on my hand and feet up to wrists and
calf's in the frigid water. She was telling me to go now, the job was
done...My feet and hands were freezing. I got to the car and turned
the heat up and used the vents to thaw myself. I had completed my
walk-a-about or personal journey, the Native Americans spoke about. No
it's not just an Australian thing.
The rest of the trip
was uneventful, actually ahead of schedule trying to hook up with friends
and always seeming to be on the wrong side of the mountains from them. I did
reach and managed to spend time with a really great human being and fellow
photographer Mark Alexander. He showed me beautiful parts of
Chattanooga which is a great little developing city. Later that
night his wife joined us for a nice dinner.
But the emotions and events caught
up with me and I needed to be alone Sunday AM until I hopped on the bird to
return home. I dropped into my seat on the big bird and ordered a
Bloody Mary and a Beef Jerky snack, the Jerky of all things which I used to
eat on the trails, I hate peanuts. Then reality set
in...eleven dollars! Peanuts were cheaper.
The Native
Americans made sense:
Dolly was born into a Methodist family,
and survived being married to me (I'm Jewish) for thirty years. Not for one
second did that ever enter into our relationship. Love that's pure isn't
polluted by human weaknesses. But the two
of us researched into other cultures that believed in the true
miracles of Gods creationalism. The basic
tenants of most Native American philosophy is very similar to basic Jewish
philosophy, simply put "the Art of Living" and many books have been written
on the subject about these aboriginal similarities. You just have to dig.
It's more about
big mountains than the big bang. Not the man made hypocrisy of the artificial story tellers,
secret rituals, Swiss bank accounts, fancy DVD's and printed matter, slick
coiffures, bottles of holy water from the city tap, mumbled false pretense and superficial enhancement, guilt and
fear motivation, golden TV studios, Rolex's, and strange headdress or is
that a hairdo? Add a
few Gulfstream G4's, tax evasion, and the latest incantation (This one
kills me) by the TV evangelist
Joyce Meyers, the $24,000 toilet. Brings new meaning to the throne being
the center of the universe. I guess so if you are full of it. I believe
one day GOD will deny hiring any of these folks as his spokesperson since he
did mention a rule that states "NO FALSE GODS
NEED APPLY".
It was the Algonquin's who said "that
beneath the clouds lives the Earth-Mother from whom is derived the
Water of Life, who at her bosom feeds plants, animals and men".
We spent many vacations on the trails there and my wife's last wishes
were to be returned to the mountains, a place we always spoke
about and the place I told her I loved her. And that place was one
that he created that enriched the soul by it's
sheer majesty and beauty. The Smoky mountains and the closeness
and spiritual history of the Cherokee Nation was such a place. And I
found the water of life.
The plains Indians, the Lakota, Nakota and Dakota also known as the
Great Sioux Nation are descendents of the original inhabitants of North
America. The Sioux were against placing the deceased in the ground. It would
trap their souls forever. At first they used trees or scaffolds
to elevate their dead, then they used above ground boxes, later adapting to
the white way of burial. That's why I didn't bury the ashes.....
They have a story...
Long ago when the world was young, an old Lakota spiritual leader was on
a high mountain and had a vision.
In his vision, Iktomi, the great trickster and teacher of wisdom, appeared
in the form of a spider.
Iktomi spoke to him in a sacred language that only the spiritual leaders of
the Lakota could understand.
As he spoke Iktomi, the spider, took the elder's willow hoop which had
feathers, horse hair, beads and offerings on it and began to spin a web.
He spoke to the elder about the cycles of life ... and how we begin our
lives as infants and we move on to childhood, and then to adulthood.
Finally, we go to old age where we must be taken care of as infants,
completing the cycle.
"But," Iktomi said as he continued to spin his web, "in each time of life
there are many forces -- some good and some bad. If you listen to the good
forces, they will steer you in the right direction. But if you listen to the
bad forces, they will hurt you and steer you in the wrong direction."
He continued, "There are many forces and different directions that can help
or interfere with the harmony of nature, and also with the great spirit
and-all of his wonderful teachings."
All the while the spider spoke, he continued to weave his web starting from
the outside and working toward the center.
When Iktomi finished speaking, he gave the Lakota elder the web and
said..."See, the web is a perfect circle but there is a hole in the center
of the circle."
He said, "Use the web to help yourself and your people to reach your goals
and make good use of your people's ideas, dreams and visions.
"If you believe in the great spirit, the web will catch your good ideas --
and the bad ones will go through the hole."
The Lakota elder passed on his vision to his people and now the Sioux
Indians use the dream catcher as the web of their life.
It is hung above their beds or in their home to sift their dreams and
visions.
The good in their dreams are captured in the web of life and carried with
them...but the evil in their dreams escapes through the hole in the center
of the web and are no longer a part of them.
They believe that the dream catcher holds the destiny of their future.
When seeing old photographs of the
Sioux, notably you will see very serious expressions on the faces. It is
not solely to the seriousness of the times but also to the feelings that
photography was a serious matter. To be photographed was an awesome
experience, and demanded dignity. They knew about the power of
capturing a moment of time. I have been blessed as a photographer to share
many moments of time and keep those images alive in my mind.
Thank you all for
all your support, the cards and e-mails have been a great help. I
apologize if the injection of humor here and there might offend some folks in what
should be a very solemn part of my life, but for thirty years a bright smile
and face has been laughing at my jokes both good and bad and that's what's
kept me going......
AL JACOBSON
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