I HAVE LOST THE LOVE OF MY LIFE…
My wife of thirty one years, 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 3/C 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 into the lungs They put her in Morton Plant Hospital in Clearwater immediately. Her surgeon showed up the next day.
She could of been the prom queen...
Doctors are the eternal optimists, they have to be. Or they couldn't do their job. But some of the things they are told by the clinical results and modern medicine and chemistry just don't go far enough. A day doesn't go by on TV that some lawyer group is challenging some medicine praised as the second coming. And some of these medical wonder drugs have side effects worse than the condition they are treating.
I will spend time on the medicine part. To handle the situation you have to know whats going on. Ovarian Cancer the "Silent Killer" doesn't come with instructions and doctors don't have the time to train you. I aggressively went after the information because my life was in her. She was my soul mate, she had my heart, nothing will ever replace that.
THE CA-125 TEST
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 trans-vaginal 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.
THIS WAS NOT GOOD
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.
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
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 HAD A STRONG ARTICLE
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… she loved the colors...
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.
THINGS I KNOW NOW - NOT ALL HOSPITALS OR PERSONNEL ARE THE SAME
Reality, set in and I'll jump around a bit but I would be remiss if I didn't share things I have learned about this situation. I may take back in time at some points…
Morton Plant Hospital, Clearwater. The finest group of Doctors, Nurses and Technicians I have ever met with a true Empathic Patient Care Philosophy (EPCP). We had the fortune of being close to Morton Plant and there was incredible communication between Dr’s, Nurses and Patients. It differed from my last visit to another hospital.
I was in literally a prisoner 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.
For 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 (above 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. No response, no doctor, no one had the time, ignored, etc.
On the fourth day I was allowed up, went for a walk to the nurses station area, and with no one around, I Dr. Jacobs, removed it, threw it in the red can for contamination, 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 WORK
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 was 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. You cannot, cannot, rely on Marker CA-125's alone.
I noticed something else. Good doctors have good doctors for associates. Bad doctors have many outside interests. The entire team performed for a flawless performance the first time That's why she came home. 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 by visitors, 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.
RECOVERY AT HOME
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 BEGINNING 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 WHO CARE, NOT THE ONES THEY SENT!
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, sometimes failing to show, failing to call, forgetful, and incompetent. Another spent one hour of questions, all related to "how they were to get paid". She took vitals which I was doing anyway. Vitals and a 200.00 dollar bill, enough...we went solo.
I had lots of first aid training on higher levels, many times with different organizations and felt I could do it better. One time their "nurse" came finally, albeit totally unprepared and I had to supply her with the wound dressings and gloves. When I saw they were doing nothing, I dismissed them and told them not to come back. I reported them to the hospital who sent the from an agency who should of been shut down,
What did I need them 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. A large garbage can double lined and sealable. 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.
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, PRAISED AS A WONDER DRUG… FAILED
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.
9 PM IN THE SURGICAL WAITING ROOM
I see her surgeon walking the hall and I asked 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 from another agency the hospital provided. Total incompetence. What a racket, I had enough.
Our provider in conjunction with Dolly's surgeon OK'd and arranged a 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 knew the vitals, anti-contamination procedures, 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...
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)
• Erythropoietin deficiency (from kidney disease)
• Lead poisoning
• 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. Twice as far away as Morton Plant.
• She was always the helper on seminars or field trips I conducted.
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.
FATE AND THE DEVIL SHOWED UP AT THE SAME TIME
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. More on this horrific accident later.
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 my cell at 10:30. I went home, alone.
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 given from the paramedics. 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.
LOCK and LOAD
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 grabbed my assault weapon, two clips and a sidearm, 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. My blood was boiling, I planned to intervene. Now they were on a clock.
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
A knock on the door. 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 was the first to show humanity. 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, as there were two witnesses at the time she went down, and he 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. They had held off on the autopsy, 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". To this day when asked would I have done something, the answer is yes, she was more than my life.
I KEPT MY WORD By the rocks in the stream, our secret place lies in the forrest
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.
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 thirty years ago, in a late winter snowstorm, 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
Tradition, 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 help from 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 Baby 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". That didn't fly when two guys carrying black leaf bags at 9: 00 P.M. walked into the hospital.
Fortunately he was smart enough to know that there is no such thing as a Jewish Santa Claus. 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 when the nurse supervisor on the night shift and a doctor came forward and one knew me...
FRUIT PLATES - BASKETS OF FLOWERS, 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 the staff to enjoy for helping my wife".
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 since the gap route was closed by the snow.
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 was OK because of the weather closing in and because 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 her "Earth Mother".
THREE THINGS STRUCK ME
Life is just a series of events some planned and some coincidence. The rest are the unexplained.
- I watched her 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 snowing, raining and drizzling with flurries just as it was almost thirty years ago when I told her I loved her, uncanny but the same day Nov 15th. The circle was complete with time and weather.
- I slipped and landed on my bottom, 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 plus 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 casually 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 incantations, Prosperity Divinity. 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" and he will refer them to Mr. Mestophilies.
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
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.
NOTE: In Lakota mythogy Iktomi is a spider-trickster spirit, and a culture hero for the Lakota people. Alternate names for Iktomi include Ikto, Ictinike, Inktomi,Unktome, and Unktomi. These names are due to the differences in tribal languages, as this spider deity was known throughout many of North America's tribes.
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....
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. He made the Deans list, not the one you want your kids on.
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, that I had won at a Kodak seminar. My friend Tom was able to scan the tiny images. She took it everywhere.