
April 24, 2006.
Wichita, Kansas
This Blog is created to stress the importance of Peace as an environmental directive. “I never give them hell. I just tell the truth and they think it’s hell.” – Harry Truman (I receive no compensation from any entry on this blog.)


I am a little ahead of myself here and we need to return to Ohio. I wanted to illustrate the extensive love that exists in this circumstance among the family and within this couple.
Ohio
Following all the excitement after the CT Scan an appointment was made with a neuro-surgeon. A biopsy was needed to know exactly what this tumor was since it was rarely found in women. The path for the surgery was minimally damaging across the board with every surgeon Patricia would subsequently come in contact. Following the surgery Patricia was in a coma for three days.
Upon wakening she was transferred to a general medical/surgical floor. You know the deal; if a patient 'qualifies' to be moved to a 'cheaper' room then do so immediately. Back then it was DRGs and today they call it efficiency. I couldn't figure out then and still can't figure out today what type of 'efficiency' this is. It sure isn't one designed by doctors and certainly not designed by patients. The USA has the worst medical model for nursing care in the world. It places patients in the care of a nurse patient ratio that is inappropriate for excellant care. Come on tell me I am wrong
After surgery, she now exhibited not blurred vision but double vision and a gait disorder (she had balance problems.) We knew there would be problems but we were all relieved to have her conscious at this point. An unfortunate accident happened in that Patricia tried to walk to the bathroom in the middle of her first night on a general floor; she feel and hit her head after a fairly fresh craniotomy. Scary word, craniotomy. Rightfully so. It is still debatable today whether 'the fall' lead to greater damage than before, but, that would not daught her recovery. This couple with the support of their families lived upto every word of praise and devotion to purpose anyone can muster. The projects Mr. Wonderful piloted were never disturbed and continued on schedule while he oversaw his wife's recovery. This was not out of greed but the 'idea' of purpose in our 'larger' self. We all just wanted what was best for Patricia. All she wanted was for Marathon to be looked after when she could not do it herself. Very simple equation. We respected the boundaries of need and sympathy all too well. It worked like a charm.
The next scare came when The Radiologist was called in. Dear God. Whatever happened to this MD to give him such lousy bedside manner is beyond me. He stated: "I have seen the results of the surgery and there is a series of treatments we can render, but, (Never speaking to Pat, The Victim, by this point.) your wife only has six months to live." Mr. Wonderful nearly died at that point and I do believe Patricia offered to call a cab. I don't know how they made it home but they did and the first phone call was to me.
After listening for nearly a half hour of trauma by Mr. Wonderful with Mrs. Wonderful on the extension clinging to some form of sanity, my very, very simple statement was: "Did you get a second opinion?" Click and the phone went dead.
Mr. Wonderful sent Patricia's biopsies to three separate (Not part of some kind of stupid health network that only manifests it's own incompetencies for any 'inefficient' venues within it.) and different medical centers. University of California at San Francisco , Mayo Clinic and The Cleveland Clinic. They concluded it was a very rare tumor for women. Researchers in San Fran found maybe 100 other cases of it. It was decided Patricia's care would go to Cleveland. She hated the idea, "...because you are treated like a number there." Lord knows, Patricia was not used to being treated like a number.
It was at The Cleveland Clinic in 1985 that Patricia came to understand how wonderful being treated like a number was when she fell under the care of Dr. Janet Bay. She stayed with her mother for thirty days in a hotel suite designed for such American princesses and received a complete series of radiation treatments. So much for six months of life.
New England. Massachusetts. "Pat is a tumor."
By the time this couple 'returned home' to New England her care was mostly centered around 'the shunt.' With the very first operation she a ventricular shunt was placed. These shunts are troublesome and can cause brain damage when they malfunction. A shunt placement is called a craniotomy as well. She sought treatment at The Lahey Clinic as she also went for scans of the tumor every six months.
There is a lot of precident regarding this case. Dr. Bay following the same surgical path as Patricia's previous surgeon, literally, biopsied this turmor herself and immediately viewed her slides under a microscope. The tumor could not be immediately excised as it would cause too much damage. Dr. Bay was faced with an issue. Before going into surgery, Dr. Bay knew the options for treatment based on the 'category' of tumors of astrocytoma . She knew if she classified this a Class One, the treatment option was repeated surgeries with any growth and a far higher potential of brain damage with each intervention. It was the sixth slide she that revealed a Class I - Class II tumor. Now, she could recommend radiation without compromising any standards of practice. Later she would recommend a new classification system called Low, Medium or High and at all 'classes' radiation would be an option. It is the radiation that nearly killed the tumor and saved Patty's life. Dr. Bay, in our family history, is the greatest neurosurgeon on Earth. She no longer is with the Cleveland Clinic exclusively, but, in private practice.
At The Lahey Clinic, the management style of a former team member of Dr. Bay's Cleveland service would conduct shunt revisions. Pat would have eleven shunt revisions with nearly no damage during her time in Ohio and Massachusetts. She eventually leaves New England and settles in North Carolina. Hospital of choice, Duke and managed by the head of neurosurgery, Dr. Friedman. Don't expect me to say kind things. Here, Patricia was less than a number and there was a good deal of damage done. There are several issues that play into this and it is sincerely tragic when 'power' enters the picture and a support system is destroyed. She no longer is treated at Duke Medical Center.
continued ...
See, Mr. Wonderful really loved her with all his heart. He was elated they had come through so much and would still have a family. Believe me there was no pressure by him to have a family. To him it was just the next step in life. The hurdles to be accomplished always seemed effortless to him. Not to her. She never returned to work because it was difficult facing the 'idea' of being handicapped and she was. She still had a gait disorder, although minimal, and she still has some impared vision but nothing that completely disabled her. She still required six month scans to track the existing tumor which the growth was very, very slow. By now the safer version of the CT Scan was in play and she was observed with MRIs. She disliked this scan because it made so much noise and she was sedated every time. Some people have that issue other than Patricia. What it boiled down to was 'Do I become a mother and risk the chance one day there is a moment of lapse that causes harm to our child of which I nor he could forgive ourselves for our selfishness? Hence, if the answer is no, do I stay a wife when I deprive him of a family greater than me? Hence, if the anser is no. Then what do I do?"
"The Happy Family" was never of concern. It was always within reach. "...for better or for worse..." were empty words at that point. She could see the future and she knew how far he would go to reassure her and she didn't want it. She could not come to terms with her disabilities and the 'idea' of him providing MORE to her was more than she could handle and the 'idea' another person might someday have to come to stay to help raise children was out of the question. She had always conducted her own life on her own terms. He the same. She was not about to have a third party compromise 'the will' they had together. There was no way she was to become a mother in a compromised status. She couldn't handle it.
She left.
The 'scuttlebutt about the divorce was nothing more than 'legalese' when turned over to lawyers. New Hampshire has very tough divorce laws and Patricia played 'a wifey role' in the proceedings. Her lawyer stated she was no longer able to participate in 'physical activity' as she once did and he was not willing to come to terms with it. Mr. Wonderful was a marathon runner, he never gave that up. So, what? She ran with him from time to time but they never competed together. The accusation, by the lawyer, was that she was mostly abandoned to the house, unable now to return to her former profession and when he came home after sometimes extended working hours he would run every evening with complete disregard for her needs. It was nothing more than a pack of lies and she signed her name to it. The entire family was appauled. She called our father now living in North Carolina from New Hampshire on a Friday night stating she was packing to move this weekend with the moving company coming on Monday morning. She asked Mr. Wonderful to stay away that weekend and that Monday through a 'technical' letter from an attorney and he complied. Up to that point we, as a family, knew nothing about this issue or this anticipated child. I am confident Mr. Wonderful was supported by his brother. My father dutifully went to New Hampshire to help her pack and for that participation we have yet to speak well of each other ever since.
The bottom line here is Mr. Wonderful is fine. He was devastated. He could not believe the allowable tone of the proceedings. He has since remarried in a Roman Catholic Church to a woman that share nearly every interest he does and they 'to date' do not have a dog or a child. He and I speak on occassion and it's always good to hear from him. We exchange greeting cards at least once a year around holidays. He could not be better and Patricia could not be worse. Oh, maybe she could but she ain't what she used to be even after the traumatic events surrounding 'the tumor.'
On to North Carolina and ownership by Duke
I strongly believe that 'Pride' is a male emotion exclusively. Even in lion venacular 'A Pride' is defined surrounding males. It is a group of lions of which the progeny are of the same long maned male. When a Pride is taken over by stronger, perhaps younger, more vigorous males it is the tendancy of the males to kill the young and induce the females into estrous.
When Patricia come to North Carolina it was to an apartment she selected not far from our parents home. It was lovely. Of course. As far as I was concerned it was also very empty. I never visited that much and I still don't. I stop in to say 'hello' and the like but the relationship has suffered because of it. She doesn't seem to mind, but, she doesn't seem to mind about anything much these days. In North Carolina, our father was King of the Pride. He was made Health Care Power of Attorney and Power of Attorney should the 'need' ever arise. It did. Not due to excellant care either. I'll explain. Dear Ole' Dad had his daughter back in worse condition than he gave her up and now he was going to Duke to keep her from getting worse. What that equated to was 'rubber stamping' everything Dr. Allan Friedman stated needed to be done next.
Dr. Friedman was a very busy man whom spent time traveling and lecturing around the world more than he spent time with his patients. It was his habit when he was 'in town' to round with his students on a Sunday Morning.
Patricia fell into crisis. I was getting no answers from our father. I was getting no answers from Dr. Friedman because he would never personally return phone calls, only his nurse did. I was getting no answers from anyone and Pat was no help, Mr. Wonderful always 'took care of her.' I demanded more information from the one man who had the clout, namely our father, and he didn't understand the 'hypervigilence' that had been given Patricia to date by her former spouse so he couldn't see things my way. Both, Mr. Wonderful and I were always on the same wave length, "Take control, demand answers, investigate and act accordingly." That was a capacity my generation perfected. It was a capacity my parents generation didn't feel comforable with and forgave themselves when they made "W"rong decisions because '...but, it was what I was told.'
My dad is a high school graduate and so is my mother. Their children are more educated than they are, yet due to their demand for respect 'by status' they override anything their children tell them. They don't like to be lectured to because they see their world in a less sophisticated manner. So for our father's lack of ability to 'take control through self education and investigation/networking' Patricia became 'Duke Property.' After all, Duke by reputation alone was a superior medical center so what could possibly go "W"rong?
Right?
"W"rong.
Reputation comes with a price. Every aspect of the private operations of reputation require 'it's selling points' and although medical and legal advertising is allowed these days, the price for 'clout' and private money comes from pandering. What Dr. Allan Friedman, head of the department at Duke whom has a spouse who is head of the department of neurosurgery at UNC - Chapel Hill do for a living is keep their 'practices' alive through some hands on surgery, which Dr. Friedman did operate on Patricia eventually, supervising residents and interns and lecturing far and wide regarding all the insights of Duke University and Medical Center.
Sorry, but, my sister was neglected because of Old World Southern Mind Set. It gets pretty ugly from here. Eventually, after the damage is done, she makes me Health Care Power of Attorney and her care gets moved to Baptist Medical Center and Dr. John Wilson who recently referred her to Dr. Thomas L. Ellis.