
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 a go) in 2003 and it has reared its ugly head again. I feared the worst. Four hours after arriving at the hospital, we had the news. The doctor in the
ER said the CT scan showed masses and spots again, good sized masses. They put
her in (Morton Plant Hospital in Clearwater) immediately.
Her surgeon showed up the next day.
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. He disclosed CA-125 testing has limitations, 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.
He scheduled surgery after a week of needed
fluids, a little building up and pre-care, plus our surgeon had a loaded
schedule, they finally 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. But time tells you things, 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. Only 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...
THE SIGNS:
• 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
o Combination pelvic-rectal exam
o CA-125 blood test
o Trans-vaginal ultrasound
o A Pap Test but IT WILL NOT detect ovarian cancer.
THE NOT SO COMMON CONNECTION:
Two other factors might add probability to this occurrence.
• Some
doctors are looking at women who have not had children, and approaching
menopause.
• Another factor might be the frequency of hormonal migraines. Those are migraines that might arise days before the menstrual cycle.
Bingo: 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. We never had children. Two strikes, two was
enough.
NEWSWEEK:
The Newsweek Article 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 Dr. Goff.
• Fall was her time.....
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.
Proms graduations and things.
THINGS I KNOW NOW:
Reality I'll jump around a bit but I would be
remiss if I didn't share things I have learned about this situation.
• 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 busting out using my military S.E.R.E (Survival, Evasion,
Resistance and Escape) tactics.
Three days I complained to the nurses about a port (with the temporary needle made of
plastic) the EMT's had put in a painful place (my thumb) that was no longer
needed since the big one was in my right arm and it was swelling bad, turning colors and hurt like a XXXXX.
On the fourth day I went for a walk to the nurses station area, and with no one around, 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 and I had no clothes. What a difference in hospitals!
• 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.
• 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 or so I thought.

• 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.
• She loved "Littlebird", our Cherokee and loved flying.
"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.
• Make things 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. I took a few myself. It got ME a few hours sleep too. Nights of
worry and anguish vanish with this over the counter drug and got her off the
Vicodin faster. . 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; basically a chemical dose of poisons. Some
feel the cure is as bad as the ailment. Nausea, body aches, pain in joints etc.
But it sometimes 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.
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 just 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.
• Trails were our medication.
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.
• Always the partner and she loved collecting leafs.
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 IN THE SURGICAL WAITING ROOM:
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 horrific skateboard accident and a few other unscheduled human frailty 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 after a few visits I threw out the home
health care people again. Total incompetence. What a racket. Our provider in conjunction with the surgeon OK and 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:
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.

• With Generals or Folks we met on the mountain trails, she was at home....
TEN SECONDS LEFT IN 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 for 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:
• Anemia
(various types)
• Bleeding
• Erythropoietin
deficiency (from kidney disease)
• Lead
poisoning
• Malnutrition
• Nutritional
deficiencies of iron, foliate, vitamin B12, vitamin B6
• Over hydration
• Red
blood cell destruction associated with transfusion reaction
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.
• She Never met a troll she didn't like!
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.
• At peace...
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.
THE LAST DAY:
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 TRAUMA center.
• Always the helper on seminars or field trips.
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 also stop an elephant. By a chance of fate Hulk Hogan (the Wrestler) was in the hospitals trauma section with his son and a young Marine who were both in a hopped up Supra that landed in the top of a Palm tree after going airborne. Young Hogan will survive but the young Marine will been in severe incapacitation for the rest of his life.
TRYING TOO 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. More frickin politics. 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...
• Loved the fall and the mountains.
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, a
Jewish Rabbi, and 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 as long as 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:
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. That was where the stoma was from the colon bypass.
She had caused a wound in the area of her STOMA. She was fixing her attaching point for the bag when she passed out. Thus the scissor was in the shower.
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 medics had found a scissor in the shower.
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.
• Loved frogs, well, all the creatures...
In all my years covering stories and seeing how people react to things, I never understood what it took to go off the deep end. I am wounded, deeply hurt and the fighter in me starts to come out. I will admit I even went as far as to grab a weapon and wanted to 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.
I WENT TO WAR
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.
NOW THE POLICE:
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 KEPT MY WORD: By the rocks in the stream.
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.
• Our secret place in the forrest.
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. 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 AND A LITTLE JEWISH TRADITION:
Sometimes involved
burning the deceased shoes so that no one shall walk over another's path. Dolly always had the heart to help others. Just 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 for Abused Women and Children. With helpfrom a friend. we delivered them within in 48 hours.
For those who do not know this charity, it provides a 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 guards (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 Bay Front.
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! Had Dolly and I been
together she would of had a purse full of goodies for us. 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 familiar 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. It was a spot Dolly and I had visited
before. 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 and so do the Australian Aborigines.
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 and the weather from them.
The passes were closed and it's a hundred miles the long way it seems. 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.
NATIVE AMERICAN THEOLOGY:
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 and the demands of controlled religionism. But the two of us researched into other
cultures. Because knowledge is understanding.
There are those those who believe in the true miracles of Gods rationalism and the beautiful world he created. We read about and looked into the other beliefs, not searching for an act of conversion but just to understand literally "how the other half lives". The basic tenants of most Native American philosophy is very similar to basic Jewish philosophy, simply put "the Art of Living". Follow the traditions. It is respect for the land and many books have been written on the subject about these ancient and aboriginal similarities from the various regions of the world. Traditions , customs, whats the difference.
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, pedophilia, abuse and the
latest incantation (This one kills me) by the TV evangelist Joyce Meyers, her personal $24,000 GOLDEN 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".
THE EARTH MOTHER:
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 picture of her by the rocks is that place.
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...
THE DREAM CATCHER:

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.
I love you baby, rest in peace....
Al Jacobson

AUTHOR and PHOTOGRAPHER: Al Jacobson, photographs and writes in the Tampa Bay area on a myriad of subjects. He is from NY and occasionally speaks English, preferring Brooklyn based meta-phonetic syllabication (aka Street Engleesh).
His high school English teacher, once commented to his parents, "He should try learning a foreign language like English... in a foreign country". He retorted, "Shakespeare doth not a genius make, for he spake in terms reminiscent of a flake". She threw him out of the class.
My name is AL JACOBSON and I documented lived, part of me died, and approved every word of this page. This was the toughest assignment of my life... most of these photos came from the little APS camera I gave her for her birthday. She took it everywhere.
